Neil Sullivan was angry, frustrated and crushed with guilt. His brother Joe had been rushed from his home for the developmentally disabled by ambulance to the emergency room, with a possible case of the coronavirus.
Neil had known the people at the Elisabeth Ludeman Developmental Center near Chicago were at risk. Regulators had flagged the facility over the years for violations such as neglect of residents and not keeping restrooms stocked with soap and paper towels. And now, in the middle of a pandemic, staffers told him they were short of life-saving equipment like surgical masks, gowns, hand sanitizers and even wipes.
He watched helplessly as COVID-19 tore through Ludeman, infecting 220 residents — more than half the people living there — and 125 workers. Neil was overcome with dread that his 52-year-old brother would be among them.
“You start thinking to yourself, is there something I should have done better?” he said.
The outbreak in Ludeman shows the threat of the pandemic to a highly vulnerable population that is flying almost completely under the radar: The developmentally and intellectually disabled. While nursing homes have come under the spotlight, little attention has gone toward facilities nationwide that house at least 275,000 people with conditions such as Down syndrome, cerebral palsy and autism. Many have severe underlying medical issues that leave them vulnerable to the coronavirus.
At least 5,800 residents in such facilities nationwide have already contracted COVID-19, and more than 680 have died, including six at Ludeman, The Associated Press found in a survey of every state. The true number is almost certainly much higher because about a dozen states did not respond or disclose comprehensive information.
Many of these places have been at risk for infectious diseases for years, AP found.
The most scrutinized places for the disabled are called Intermediate Care Facilities, which can range from large state-run institutions to smaller homes for a handful of people. Before the coronavirus hit, regulators concluded that about 40 percent of those facilities — at least 2,300 — had failed to meet safety standards for preventing and controlling the spread of infections and communicable diseases, according to inspection reports analyzed by AP. The failures, from 2013 to early 2019, ranged from not taking precautionary steps to limit the spread of infections to unsanitary conditions.
About 66,000 people live in ICFs. Thousands more live in other types of group homes that provide similar care but operate under less scrutiny. No such inspection data exists for those. But AP found they have also have been hit hard by the virus.
“These people are marginalized across the spectrum,” said Christopher Rodriguez, executive director at Disability Rights Louisiana, which monitors the state’s homes for the disabled. “If you have developmental disabilities, you are seen as less than human. You can see it in education, civil rights, employment. And now, you can see it by how they are being treated during the pandemic.”
Advocates told AP that homes for the disabled scrambled to find protective equipment and were slow to test residents and employees for COVID-19.
They are urging the federal government to do more to protect the disabled in congregate settings. For example, as the virus spread, the Centers for Medicare and Medicaid Services (CMS) ordered states to provide information to the federal government about COVID-19 in nursing homes. But the requirement did not extend to homes for the disabled.
CMS did not comment after repeated requests from AP.
When COVID-19 began spreading across the country, Neil prayed it wouldn’t hit Ludeman — where about 340 people live in 40 ranch-style homes.
For Neil, the coronavirus is only the latest of a string of challenges with Joe at Ludeman. Neil had tried to move his brother into another institution with more activities, but Joe was turned down because that facility considered him too aggressive. For people like Joe, options are scarce.
Ludeman has been cited dozens of times since 2013, most often for safety violations, AP found.
Meghan Powers, a spokeswoman for the Illinois Department of Human Services, which oversees the facility, said the high numbers are driven in part by the fact that all residents have been tested.
“We do know that caring for people with developmental disabilities requires hands-on care, which makes it impossible to implement complete social distancing,” Powers said.
Like Ludeman, many other Intermediate Care Facilities struggled to contain outbreaks, AP found. Nearly half of the 2,300 ICFs with past problems controlling infections were cited multiple times — some chronically so, over the course of multiple inspections.
After finding out his brother was being rushed to the emergency room. Neil discovered that the facility was running low on supplies.
He collected goods and took them to Ludeman. When he got there, he got a surprise. There he was, Joe. Sullivan’s heart raced. He smiled, then waved to his brother through the window.
“I can tell you it made a world of difference because I really, genuinely believed he was going to die until I saw him,” he said. “Once I put my eyes on him, he still didn’t look good. But I believed he was going to pull through.”
Joe would beat the virus. But others wouldn’t be so fortunate.