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Advocating for More Nursing Home Accountability, Addressing Disparities for Black and Brown Residents

Illinois State Capitol

After Julia E. Preston’s brother had open-heart surgery in 2012, she had no other option but to place him in a nursing home. 

Once he was moved to a facility on Chicago’s South Side, Preston, who is African American, noted deficiencies in his daily care.

“The service was so inadequate. It was horrible,” says Preston, 71, of Evergreen Park. “Family members want their loved ones taken care of, and nursing homes want to see a profit.” 

Preston joined the facility’s family council to spur change. When that didn’t work, she formed the Regional Family Council Consortium Network, which tries to eliminate abuse and neglect in nursing homes and long-term treatment centers through education and public awareness. Her brother, Curtis Spears, died at 72, in 2017.

A new study shows that Preston isn’t alone in dealing with care-quality challenges. 

The Sept. 30 Illinois Department of Healthcare and Family Services report to the General Assembly documents disparities in the treatment of Black and brown nursing home residents compared with white residents.

“Black and Brown customers were disproportionately impacted by disease and death because they were more likely to reside in poorly staffed facilities and in ‘ward’ rooms containing three or four beds per room,” according to the report. “[A]t least 40 percent more Black and Brown Medicaid customers in nursing facilities perished than would be expected based on COVID-19 mortality rates among White nursing facility residents.”

Spotlight on Care Options

AARP Illinois wants the state to be more accountable on nursing home issues and to shift its priorities to having older adults age in their own homes, says Lori Hendren, the organization’s associate advocacy and outreach director. 

“It’s unfortunate that so many people have suffered,” Hendren says. “Their bodies have suffered, their emotions have suffered, and their loved ones have suffered.”

A new effort by AARP Illinois seeks to shift the emphasis to providing services that help keep  older and vulnerable adults in their homes. It favors:

  • Changing the way nursing homes are reimbursed so that they’re rewarded for meeting minimum staffing levels and quality-of-care indicators. 
  • Enhancing funding for home- and community-based services.
  • Ensuring that facilities have access to vaccines and strong COVID-19 protocols.
  • Ending the practice of having three to four residents in a room.

AARP Illinois will soon publish research focused on state residents 50-plus highlighting inequities in nursing homes, barriers to quality of care for residents and policy solutions to transform how Illinoisans age. 

It is working with aging and disability advocacy groups such as the Alzheimer’s Association, Chicago’s Access Living and SEIU Healthcare to press lawmakers for improvements. 

“AARP Illinois has long been an advocate and champion in the statehouse and the community to improve how we age and the options older adults  have,” Hendren says. 

“We’ve long advocated for home services, affordable housing and making sure Illinois is a place where you can age with independence,” she says. 

Get involved by visiting or calling 866-448-3613.

Kelly Ganski is a writer living in Bartlett, Illinois.

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