At South Jersey center for disabled adults, COVID-19 has killed 8 while infecting most residents and many staff

As the coronavirus began spreading through New Jersey, Marie Ryan knew her brother, Joe Pearson, was in more danger than most.

Pearson, 55, had suffered a severe brain injury as a teenager and now lives at the New Lisbon Developmental Center, deep in New Jersey’s Pine Barrens, along with dozens of other medically fragile residents.

“I thought ... it’s going to spread like wildfire,” Ryan said. “I knew it was going to be an issue. It was kind of like I was just waiting for the phone call.”

Over the last two months, the virus has ripped through New Jersey’s five state-run residential facilities for people with developmental disabilities, killing 27 as of Friday and infecting more than a third of the 1,238 residents -- including Pearson.

Many have underlying medical conditions that put them at high risk for contracting the virus. Some are nonverbal and can’t express how they feel. Some don’t have families who can advocate for them.

Centers like New Lisbon were preparing for the pandemic as early as February, said Jonathan Seifried, who oversees the state Division of Developmental Disabilities, which is responsible for the five facilities.

“It’s been challenging, and we’ve had heartbreak and long days and nights, but we’ve protected many residents and staff and seen many recover,” Seifried said in an emailed statement.

New Lisbon’s efforts have included testing for all workers and staff and a tiered quarantine procedure, officials said, though many had already been sickened by the time these were fully implemented. Unlike Pennsylvania, New Jersey has released information about residents in such state facilities, though officials would not provide details about victims’ ages or underlying health conditions.

The explosion of cases, though, speaks to the limits of the state’s efforts. Of all the state-run centers, the virus’ toll has been heaviest at New Lisbon, with eight residents dead out of 188 infected as of May 10. That’s 44% of all the cases at the state’s five residential facilities. Eighty-seven New Lisbon staff members have also tested positive for COVID-19. Others have stopped coming to work for fear of getting infected, leaving the facility understaffed, workers say.

Tom Hester, a spokesman for the state Division of Developmental Disabilities, said staffing is “a challenge” during the pandemic, but countered that the state’s facilities had been able to “maintain adequate staffing levels."

Isolated in rural Burlington County, New Lisbon’s troubles have been largely overlooked but for the Pine Barrens Tribune, which has faithfully chronicled the coronavirus’ spread through the center.

Staffers at New Lisbon, who spoke on condition of anonymity for fear of losing their jobs, described a facility that lacked preparations including protective gear for staffers, and missed crucial early opportunities to limit the spread of the virus.

“It seems like the disabled community were the last ones thought of, which is not unusual in life itself,” said Steve Sweeney, New Jersey’s Senate president, who three weeks ago urged the state to send PPE to New Lisbon and other centers like it.

Planning for the anticipated pandemic began in February, the Division of Developmental Disabilities reported, and by March authorities had limited visitors to the facility, began taking residents’ temperatures, and instituted a policy of sending home staff with symptoms of COVID-19. In early May, testing of all residents and staff began.

But workers said the facility did not quarantine infected residents in a separate building until mid-April, instead confining them to their rooms. The same workers served both the healthy and the sick.

On Wednesday, a staffer learned she would be working with two people thought to have recovered from the virus, but who still were testing positive. Even so, she was told, they weren’t going to be moved back to a quarantine unit.

Frustrated and fearful for her own life, she and another worker walked off the job in tears.

New Lisbon is a sprawling campus of residential cottages off a four-lane highway outside of tiny Woodland, N.J. Since 1914, it has housed people with developmental disabilities, though, in many cases, residents have other health conditions as well.

“Some people may look at it as a paycheck,” said a New Lisbon health aide, “but some of us look at it where we really love and care for these people because [some] don’t have no families.”

Pearson, who has five siblings, visits their homes on birthdays and holidays and regularly chats with his family on the phone. But he needs daily care that his family can’t provide.

His sister lives in Berlin, about 40 minutes away. She’s been happy with the care her brother gets at New Lisbon. But, she notes, the cottage where Pearson lives has bedroom walls that don’t reach the ceiling, making it impossible to truly isolate residents.

Pearson tested positive for the virus in early May after his roommate contracted it, Ryan said. He’s asymptomatic, but still frightened. In a phone call with Ryan’s older sister, he said he was terrified of dying.

The Burlington County facility has a history of problems. It was placed under independent oversight after the Centers of Medicare and Medicaid Services (CMS) found in 2002 that residents weren’t getting needed medical and psychological care, leaving them vulnerable to abuse.

Last year, the center reached a $150,000 settlement with a female employee who reported being sexually harassed by a male coworker. The state did not concede liability in the settlement.

Gwen Orlowski, executive director of the advocacy organization Disability Rights NJ, said she believes state officials were “doing everything within their power to try to prevent the spread of the disease as best they could, given the fact that they really didn’t know who had the virus.” But without being able, early on, to test asymptomatic staffers who come and go from the facility, residents couldn’t be protected, she said.

Like peers nationwide, the Division of Developmental Disabilities faced a protective gear shortage that has left even the most well-off hospitals struggling to stay supplied.

Sweeney said that when making decisions about deploying its limited protective equipment and test supplies, the state failed to consider the developmental centers.

“The prioritization was our hospitals and our doctors, then everyone turned their attention to the nursing homes,” said Sweeney. “But no one paid attention to this community.”

Hester said that while more PPE than usual has been necessary during the pandemic, the state has supplied the “recommended PPE” to its employees and “regularly monitors” its supply to make sure they’re not dipping low.

“The Centers have been able to maintain sufficient levels of PPE so that staff members working with residents or in residential units have the appropriate PPE for the duties they are performing,” he wrote in an email.

Two nurses who work at New Lisbon, who also requested anonymity for fear of retribution, described feeling well-protected and supplied.

“When I was there for work,” one said, “I was given whatever I needed.”

But some health-care aides who handle intimate daily care such as bathing, say they are left behind.

Though Hester said that staff are provided fresh PPE at the beginning of a shift, and replacements when needed, several New Lisbon staffers said they each received one N95 mask weeks ago, and none since. Some healthy staffers are using disability leave to stay home.

Because there simply aren’t enough staff to go around, workers said, no team works solely at quarantine cottages, avoiding contact with New Lisbon’s healthy population and limiting the spread of infection.

Hester said that direct care staff are assigned to a single cottage each shift. But one staffer described traveling between cottages housing the infected and uninfected during one shift.

Staffers said that they do switch gloves and using hand sanitizer before traveling among buildings. But since such measures don’t protect staffers from infection, they can’t see how they would protect residents either.

A worker who had tested positive for the virus and has since recovered said the facility was so understaffed that over the course of a shift one person alone could be responsible for the care of more than 25 people.

Before the pandemic, that was a job for seven or eight people.

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A number of workers described the grim endpoint of scant staffing: Residents being alone as they lay dying. The worker who walked out Wednesday chose to visit a long-time resident while he was quarantined.

“When he was in the quarantine room, he was there by himself,” she said.

She learned he died the next day.

As the virus first spread, the facility was able to test only those with symptoms -- a situation that has persisted in much of the country. The state announced universal testing with a Rutgers University-designed saliva kit in late April. New Lisbon staff said some were not tested until the first week of May.

The sudden access to testing contributed to a spike of confirmed COVID cases in state-run developmental facilities in May, state officials said.

New Jersey is the first state in the country to offer universal testing to residents and staff in centers for the developmentally disabled.

“Our universal testing shows how we are working to be a leader among states when it comes to protecting residents and staff and combating the spread of this virus,” Seifried said in his statement.

Orlowski said the center has put people who tested positive in one building, those who were symptomatic but not confirmed were put in another, and there was a third space for people who were recovering.

Two nurses who work at the facility (who also spoke anonymously for fear of job loss) say the sick are recovering, and the latest state data shows 75 residents and 27 staff who had been infected no longer test positive for the virus.

Other workers, though, say the situation at New Lisbon remains bleak. Sweeney acknowledged that even with a new influx of PPE, the state’s developmental centers are struggling to keep all workers fully equipped.

The woman who walked off the job Wednesday described spending weeks working in a cottage housing both the healthy and infected, before deciding she was not safe.

“This disease is not going to stop,” she said. “I’m not going to put my life at risk a second time.”

She’s been coughing a lot recently, she said, and Tuesday was tested for the coronavirus for the first time. On Saturday, she was still awaiting the results.