A new coalition of disability rights groups is calling on Illinois Gov. JB Pritzker to take emergency action to protect residents in nursing homes and other congregate care facilities from the spread of COVID-19.
With nursing homes linked to more than 55% of all COVID-19 deaths in Illinois, the Institutional Rescue and Recovery Coalition on Tuesday called for the state to move some residents out to temporary hotel rooms to allow for social distancing and to make facilities less crowded.
“This coalition is calling for more than sympathy and sorrow at the death rate,” said Fran Tobin, executive director of the Alliance for Community Services, one of the groups in the coalition.
As of July 3, according to data from the Illinois Department of Public Health, a total of 3,856 deaths out of 22,833 COVID-19 cases were linked to long-term care facilities in the state. That’s a rate of 16.9% — about six-and-a-half times greater than the 2.6% rate for the 3,148 deaths out of 122,917 COVID-19 cases in Illinois that are not linked to nursing homes.
“We are here to demand an emergency response to an emergency,” Tobin said. “If this were a fire or flood or hurricane, buildings and whole communities will be evacuated.”
Tobin told WBEZ the percentage of people with disabilities in nursing homes and other long-term care facilities is not known, “mostly because once folks are older than 65, they are generally lumped into the senior category and usually not broken out as to having a disability.”
He also said the coalition is “open to starting small — a pilot project that gets a few hundred out of facilities into safer hotels would be an important step.”
State officials did not immediately respond to requests for comment.
Marcie Roth, CEO of World Institute on Disability in Washington, D.C., said “at least 50,000 people with disabilities have died in congregate facilities in the last 125 days.”
“No one goes to a nursing home because they are old, only because they have a disability, and weren’t provided with adequate support to remain in the community,” Roth added. “We’ve got to stop the killing of tens of thousands of people with disabilities, and we can do it — the resources from the federal government can be used.”
Lyndsay Sullivan, a member of Chicago ADAPT, a disability rights group, said she and her roommate have “essentially barricaded ourselves in our room” at Lakefront Nursing and Rehabilitation Center in Chicago’s Rogers Park neighborhood. According to the Illinois Department of Public Health, Lakefront has reported 18 cases of COVID-19.
“We can’t completely isolate ourselves; we’re always in close proximity to other residents and staff,” said Sullivan, who added that her mental health is declining due to fears of the virus.
Esther Sanders, with Progress Center for Independent Living, a Forest Park organization that helps people with disabilities to live independently, said a few of her clients contracted COVID-19 while living in nursing homes. Sanders said nursing homes are keeping families, advocates, and ombudsmen from visiting, citing safety reasons.
“While the nursing homes may be cutting off social contact in the name of safety, why in the name of security is more not done to protect people in nursing homes with protected gear?” Sanders asked. “Why is more not done to transfer people out of nursing homes to isolated settings, where the risk would be not as great?”
Esther Yoon-Ji Kang is a reporter for WBEZ’s Race, Class and Communities desk. Follow her on Twitter @estheryjkang.