Black and brown Illinoisans in long-term care facilities died of COVID-19 at comparatively higher rates compared to white Illinoisians in the first few months of the pandemic.
That comes from a study released last week by the state’s Department of Healthcare and Family Services. HFS told a panel of lawmakers about the disproportionate number of deaths for minority nursing home residents a day after Gov. J.B. Pritzker signed an expansive law last week meant to address racial inequities in health care.
In a presentation before a joint House committee hearing, HFS criticized the use of long-term care facilities that crowd bedrooms with three or more residents — given the propensity for higher transmission.
In 2016, the federal Centers for Medicare & Medicaid Services recommended limiting long-term care facility bedroom occupancies to two people in newly constructed, reconstructed or recertified facilities.
According to data collected by HFS between March and July 2020, 60% of COVID-related deaths of nursing home residents on Medicaid occurred at facilities where at least 10% of residents lived in rooms with three-plus people.
HFS Director Theresa Eagleson said that although crowding is especially pronounced in urban areas like Chicago, it’s an issue statewide.
“Illinois is one of the most over-bedded nursing home states in the country,” Eagleson said. “Three- and four-bed rooms are, while concentrated in Chicago, are not exclusive to Chicago.”
When comparing mortality rates across different demographics, the department’s analysis found Black and Latino Medicaid residents were 40% more likely to die of COVID during the first few months of the pandemic compared to white Medicaid residents.
HFS Deputy Director for Strategic Planning and Analytics Andy Allison said one of the reasons for the disproportionate mortality rates was the stronger likelihood that Black and brown nursing home residents live in facilities that are both overcrowded and understaffed.
“This tragic and inequitable difference in COVID’s Wave 1 impact essentially disappears when also controlling for the disproportionate number of Black and brown residents that live in ZIP codes with higher Wave 1 COVID infection rates,” Allison said.
Eagleson told lawmakers that although the Illinois General Assembly has passed legislation to increase staffing in long-term care facilities — with the most recent initiative passing in 2019 — the state has failed to allocate funding for those initiatives.
The department proposed that the state fund an incentive proposal that would reward facilities based on required reports they submit to the federal government documenting both a commitment to increase staff sizes and the types of direct patient care staff members offer to residents.
“We're going to pay a base payment, but then add on to that, pay a multiplier for each threshold of staffing that is actually reported,” Eagleson said. “We would change that every quarter based on actual staffing performance. ... We propose to no longer just pay-and-trust, you know. We propose to monitor and pay accordingly.”
However, advocates of long-term care facilities argued, although they support accountability measures, decreasing beds in rooms and increasing staff sizes are not easily accomplished and are further complicated by financial strains.
“We have to look about this globally,” Health Care Council of Illinois Senior Policy Advisor Donna Ginther told the committees. “If we reduce the number of beds, so these are all ifs, if we're reducing the number of beds in a facility, we're driving down the revenue coming in. At the same time, we're seeing the cost of the staffing going up, and we want to staff up, and there's a requirement saying we're going to have to increase staff.”
Ginther said as a result of financial pressures, including the state’s commitment to raise the minimum wage to $15 an hour by 2025, facilities are finding it difficult to afford retention.
“Forget hazard pay, it's now just straight wages. A gentleman told me this week that he's paying $17 an hour in Chicago for a [certified nursing assistant],” Ginther said. “This is never going to revert to what our old normal was. These are families that have built their family budgets around these increased wages. They're not going to continue to work for us unless we are able to sustain the higher wages.”
However, other members of the committee, like state Rep. Lakesia Collins, D-Chicago, who previously worked in a long-term care facility, pushed back on placing the blame of staffing shortages on salary increases.
“That wage goes to workers who have been on the job for 30-plus years, who were at a wage of $11 or $12 an hour,” Collins said. “Someone like me who worked for 10 to 11 years on a dementia unit started off at $8.42, and ended at $10.35. ... And so 17 [dollars per hour] is still not enough.”
Lack of access to outside world
The other major issue raised during the hearing was the numerous complaints nursing home residents and their families filed with the state about the lack of communication during COVID-19 lockdowns.
The state’s Long-Term Care Ombudsman Kelly Richards told lawmakers although state and federal guidelines have been amended throughout the pandemic to allow for alternative forms of communication and visitations for compassionate care situations, her department still receives complaints of people being denied access.
“We've heard countless stories of residents who have experienced a significant decline in their health and many more who have died after no longer having access to loved ones,” Richards said.
During the hearing, speakers shared anecdotal stories of having to jump through a series of bureaucratic hoops just to communicate with their significant others.
Katie Zaba talked about the difficulties her uncle Jack had once COVID began, and how the mandated decrease in personal visits took a toll on his physical and mental health.
“Going from those five to six visits a week to zero were proving to be too much,” Zaba said. “He was more and more defeated and depressed.”
Zaba said the strict restrictions of Jack’s long-term care facility, where he was a patient due to a lifelong mental illness, limited even his outdoor time on the campus premises to less than 10 days over the past year.
“Why could these delivery drivers, staff, exterminators walk past Jack without any issue, yet family couldn't even hand them a snack for later?” Zaba asked.
Ginther and other representatives of the Health Care Council of Illinois said although they worked “tirelessly” to coordinate with public health state agencies and the governor’s office, and responded to a number of complaints that came into their office about families not having access to residents, there were policies or decisions that could have changed in retrospect.
“If we knew in January of 2020 what we know today, life would have been different because we learned as we went and it's not because it was someone not giving information or not trying to do the right thing, but it was an unknown quantity,” Ginther said.
Richards, the ombudsman, said in response to the number of families who found it difficult to connect with their loved ones during the pandemic that she supports a proposal making its way through the General Assembly that would require virtual and other forms of communication for nursing home residents during periods of social isolation.
The measure would mandate a resident’s right to connect with loved ones, religious worship services and recreational activities.
The House Mental Health and Addiction Committee and the House Human Services Committee plan to hold another joint hearing on COVID’s impact on Wednesday and have invited additional representatives from long-term care facilities.
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