Neil Sullivan was angry, frustrated and crushed with guilt. His brother Joe had been rushed by ambulance from his home for the developmentally disabled 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, a staffer told Neil they were still 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. Six residents and four staff members would die. 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 experts have estimated house more than 275,000 people with conditions such as Down syndrome, cerebral palsy and autism. Many residents 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, 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, including two of the biggest, California and Texas.
Many of these places have been at risk for infectious diseases for years, AP found.
Perhaps the best-known government-funded homes for the disabled are called Intermediate Care Facilities, which range from large state-run institutions to homes for a handful of people. Before the coronavirus hit, regulators concluded that about 40 percent of these 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 obtained by AP. The failures, from 2013 to early 2019, ranged from not taking precautionary steps to limit the spread of infections to unsanitary conditions and missed signs that illnesses were passing between residents and employees.
No such data exists for thousands of other group homes for the disabled because they are less regulated. But AP found those homes have also 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 are urging the federal government to do more to protect the disabled in congregate settings. They noted that as the virus spread, the Centers for Medicare and Medicaid Services (CMS) ordered states to provide information to the federal government about COVID-19 infections and deaths in nursing homes. CMS also increased fines and made data about infections in nursing homes available to the public.
But the requirements did not extend to homes for the developmentally disabled, where the overall population is smaller but the virus is still taking a heavy toll.
“The lives of people with disabilities in these settings are equally as at risk — and equally as worth protecting — as people in nursing homes,” the Consortium for Citizens with Disabilities said in a May 5 letter to Alex Azar, secretary of the U.S. Department of Health and Human Services, which oversees CMS.
Some states had outdated plans and policies to face a pandemic, said Curt Decker, executive director of the National Disability Rights Network. In Georgia, for example, he said the state’s policy provided for protective equipment for nursing homes, but not homes for the disabled. He said staffing levels and training were already “a crisis” across the country even before the coronavirus.
“It was clearly a disaster waiting to happen,” he said.
CMS did not respond to the AP’s questions within two weeks and did not say why requirements are different for nursing homes. For days, the agency said it was working on a statement, but did not provide one.
_______________
As the outbreak spread through Ludeman, Neil felt as helpless as on the day his family dropped Joe off at the facility decades ago.
His parents believed they couldn’t have children, so they adopted Joe. But shortly after, his mother discovered she was pregnant with Neil.
As children, Neil and Joe shared the same room. When Joe developed severe behavioral problems, their parents turned to Ludeman.
To this day, the images of leaving his brother behind at the institution are seared into Neil’s memory. He looked back and glimpsed his brother, staring out a window, wailing.
“It was the most desperate cry you could ever imagine,” he said. “It was a child that knows it’s being left behind by its parents.”
Over the years, Neil looked out for his brother. As his parents got older, he became Joe’s legal guardian, driven by “survivor’s guilt” from that day so long ago when they left Joe behind.
When COVID-19 began spreading across the country, Neil prayed it wouldn’t hit Ludeman - where some 340 people live in 40 ranch-style homes spread across a campus that resembles an apartment complex.
About 66,000 people nationwide live in Intermediate Care Facilities like Ludeman. Even more people live in other types of group homes, which operate under less scrutiny. Nobody, not even the federal government, seems to know exactly how many people live in these homes, which advocates say is another sign of a highly marginalized population.
More than 2,100 homes for the disabled have seen COVID-19 infections among residents or staff, according to the AP survey — an undercount because not all states provided specific information.
The virus poses an especially big risk for the disabled. Some are bedridden or prone to seizures. Others have visual or hearing impairments and are non-verbal, so they can’t articulate when they don’t feel well. And social distancing - one of the key preventive measures for COVID-19 - is nearly impossible because many residents have roommates, share common living areas and need full-time assistance for basic tasks like brushing their teeth.
“You’re dealing with a community that needs constant 24-hour, one-on-one supervision,” said Joe Montemayor, whose union represents employees at homes for the disabled in Texas. “Their reasoning isn’t quite there, so you do your best to teach them about the spread of germs and things like that.”
It’s gotten so bad that some staffers are afraid to report to work, Montemayor said.
Advocates also worry that the special needs and fragile medical condition of the developmentally and intellectually disabled will make them a low priority if hospitals - especially in rural areas - are overrun with COVID-19 patients. Disability rights groups have filed federal civil rights complaints against several states to stop ventilator-rationing proposals, fearing that the disabled will end up last in the line because they may not be able to adhere to protocols after an operation or procedure.
“People with disabilities have just the same right to extend their lives for as long as possible as any other human,” said Elizabeth Priaulx, a legal specialist with the National Disability Rights Network.
For the families, the fear of the virus is compounded by the fact that they can’t visit their loved ones.
Stephanie Kirby’s voice breaks when she talks about her son Petre, who has lived in the Denton State Supported Living Center in Texas for three years. More than 60 of the 443 residents at the large, state-run ICF contracted the virus, according to the local health department. AP found the facility has been flagged seven times for poor infection control practices since 2013.
Petre is 28, but functions on the level of a 4-year-old. Kirby hasn’t seen him since March, when the governor banned visitors to prevent the spread of the disease. It’s the longest they’ve been apart since she adopted Petre from a Romanian orphanage.
Now, Kirby worries not only about Petre’s health, but about the emotional impact the separation might have on him. She doesn’t want him to feel like she has abandoned him - like his family did in Romania. But she fears it’s too late.
Kirby said she’s asked Texas officials all the way up to the governor’s office why they won’t allow her to see her son, and she’s gotten the runaround. On Mother’s Day, Kirby drove to Denton, parked her car outside the front gate and sat there for three hours, crying.
“I didn’t know what else to do,” she said.
Christine Mann, a spokeswoman for the Texas Health and Human Services Commission, said the agency is working closely with the facility to prevent the spread of disease. Mann said that infection control violations were “minor incidences” immediately corrected, and that the facility has increased video conferencing and added phone lines to help families.
But for Kirby, that’s not enough. “When will a mom be considered an essential person in the life and health and well-being of her children?” she asked.
___________
For Neil, the coronavirus is only the latest of a string of challenges with Joe at Ludeman.
Many staff members have been kind, and Neil praised those who have worked with his brother in recent years. But some of Joe’s teeth were knocked out in the 1990s with no good explanation, Neil said. At other times, Neil suspected Joe didn’t receive the attention he needs.
“There were people there, especially in the past, that really treated them like zoo animals,” Neil said.
Neil 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 but also for more serious issues, including mistreatment of residents. While Ludeman was not cited specifically in the infection control category, inspectors noted that staff didn’t always encourage practices like proper hand washing.
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.
“It is also sometimes challenging for our residents to adhere to all of the protective measures we are taking,” Powers said.
The agency implemented “many new protocols” at Ludeman and other facilities across the state on March 12 that included creating an infectious disease team, restricting visitors and checking the temperatures for all staff and residents at shift changes, Powers said. She acknowledged that Ludeman had challenges in the past with maintaining soap and paper towels, but she said that problem was solved by improving its supply distribution. And while shortages of personal protection equipment were an issue across the state, staff working directly with sick residents “have never run out or been severely short to date,” Powers said.
Like Ludeman, many other homes for the disabled have struggled to contain outbreaks, AP found.
Nearly half of the 2,300 Intermediate Care Facilities with past problems controlling infections were cited multiple times — some chronically so, over the course of multiple inspections. In dozens of instances, the problems weren’t corrected by the time regulators showed up for a follow-up visit. At least seven times, the safety lapses were so serious that they placed residents’ health in “immediate jeopardy,” a finding that requires make prompt corrections under the threat of a losing government funding.
Inspection reports show that regulators repeatedly found examples of:
_Staff not washing hands while caring for multiple residents or re-using protective gear like gloves and masks.
_Unclean environments, such as soiled diapers or linens left out, insect infestations, dried body fluids and feces on surfaces of common areas.
_Outbreaks of influenza, staph/MRSA and scabies in a small number of cases.
Other types of group homes aren’t included in the data, but it’s clear that many were also poorly prepared to stop the spread of the virus, the AP found. For example, hundreds of group homes in Massachusetts reported positive cases, as well as the state’s two Intermediate Care Facilities, according to the AP and advocacy groups. Advocates say low pay and difficult working conditions have led to high staff turnover and inadequate training, exacerbated by the pandemic.
The outbreak at Ludeman was so bad that the National Guard was called in to help. A family association asking for supplies said Chicago’s Major League Baseball teams donated 2,200 rain ponchos that the staff could use “until disposable gowns are available.”
When Neil got the call that his brother was infected with COVID-19, all the years of frustration spilled over.
“It was just rage,” he said. “I was so upset that I was afraid to talk because I didn’t know what was going to come out of my mouth.”
It didn’t help that he was on his own. His father has Alzheimer’s and is in a nursing home fighting its own outbreak; his mother has chronic lung disease.
After finding out his brother was being rushed to the emergency room. Neil called Ludeman’s staff and talked to other families. He was told that the facility was running low on critical items like protective masks, gowns, disinfectant - even anti-bacterial soap.
So he began a drive to collect goods, calling friends and family and reaching out to people on social media. After he had enough supplies, he decided to make a trip to Ludeman. He didn’t even know if they’d let him onto the campus - the facility was on lockdown. But he was going to try.
As he pulled up to the red and brown brick building with white trim, he didn’t know what to expect.
No one stopped him. He jumped out of the car and began unloading the goods. And then he got a surprise. There he was, Joe, sitting in a room with a staff member. 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.”
In the end, Joe would beat the virus. Others wouldn’t be so fortunate.
Please read our comment policy before commenting.