Photo by Jeff Rhode / Holy Name Medical Center

A dozen severely disabled people who live in state-funded residences have died; another 74 have tested positive. As with hospitals, PPE is in short supply in group homes

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By Lilo H. Stainton

As the death toll from COVID-19 climbs past 1,000 New Jersey residents, state officials said Monday that the fatalities have included a dozen severely disabled individuals who depended on the government for a place to live or help with daily tasks.

In all, 86 New Jerseyans with intellectual or developmental disabilities have tested positive for the disease caused by the novel coronavirus now rampaging through the state, officials said, including the 12 who died. Nearly four in 10 of the infections are linked to residents of state-run developmental centers; the rest relate to individuals living in the community, in group homes or with family. All but one of the deaths involved a resident from a community setting.

“We are deeply saddened by the tragic passing of these valued members of our New Jersey community. Every loss is felt deeply, and every one of these amazing souls will be missed. Each brought a unique light to our world that will not be forgotten,” said Carole Johnson, commissioner for the state Department of Human Services, which oversees programs for disabled individuals. “We send our condolences to their family, friends and caregivers and join in mourning their loss.”

For weeks, state officials have taken increasingly drastic steps to restrict the spread of the coronavirus, which has now been found in more than 41,000 residents, including the 1,003 who had died as of Monday. This has included closing schools and most businesses and requiring people to stay home except for necessities, as well as suspending in-person visits at hospitals, nursing homes and other institutions, like prisons.

State moves to protect disabled residents

The state has taken similar precautions to protect the roughly 1,200 residents of its five developmental centers, residential facilities that care for some of New Jersey’s most vulnerable individuals. And DHS has suspended day programs, supportive work initiatives and other group activities for individuals with disabilities who live at one of the more than five-dozen group homes, or in private homes with aides or family members. In all, roughly 25,000 people benefit from these services.

The department, through its Division of Developmental Disabilities, has also provided regular guidance on infection-control protocols for group home operators, residents and their family members. It has also waived certain hiring requirements to make it easier for these facilities to hire additional staff and provided bridge funding to help them make payroll and maintain appropriate services, according to DHS.

“The health and safety of residents with intellectual and developmental disabilities and those who assist them every day is paramount,” department spokesman Tom Hester said.

According to data DHS released Monday, 62 disabled individuals in community programs have tested positive for the disease, as well as 24 in the developmental centers; individuals can only be tested if they have respiratory symptoms, according to federal guidelines amid a chronic lack of testing supplies. Eleven residents in group homes or private residences have died, as well as one person at one of the state’s developmental centers. (Additional specifics were not provided.)

Few resources to deal with crisis

Valerie Sellers, president and CEO of the New Jersey Association of Community Providers, which represents 57 organizations that operate group homes, day programs or other services for individuals with disabilities, praised the DHS efforts to communicate and support these operations. But she said providers faced staff shortages and funding limitations long before the coronavirus epidemic, leaving them with few resources for a crisis.

“Our members aren’t ever flush with reserves,” she said. “The stress level for our providers is very high right now.”

The situation is also confusing for residents, many of whom have limited understanding of the situation. Group homes can no longer host family-style meals or activities — which could prompt the spread of the virus — so many individuals spend most if not all their day in their rooms, where they also get meals.

One major concern is the lack of personal protective equipment, or PPE — the masks, gowns and face shields that health care providers need to protect themselves against the transmission of the COVID-19 virus, which is spread in droplets when an infected person talks, coughs or sneezes. Staff must now be screened for respiratory symptoms and put on protection before engaging with residents.

Sellers said providers have some PPE stocks on hand but these are running short. But because they are not medical providers, these facilities have struggled to obtain more from the state and federal stockpiles that are being used to restock hospitals, which are also in short supply.

“We’re not on the list” for PPE distribution, Sellers said, noting she is also looking into private purchases, despite the high costs. “If we’re getting anything, we’re lucky.”

Without proper PPE, Sellers fears the staff — already stretched thin in good times — will become sick and no one will be able to care for these vulnerable individuals. “The DSPs (direct support professionals who provide daily care) are also front-line providers,” she said.

“The entire system depends on our direct support professionals,” agreed Terry McKeon, executive director of Avidd Community Services, which runs 16 group homes in the northern half of the state. He praised the dedication of the staff and acknowledged some are understandably afraid.

“They’re very dedicated. The issue now is they are fearful for their own health and safety as well as for that of the families they live with,” McKeon said. Changes in the workforce are also disconcerting for residents, many of whom have close bonds with their regular caregivers, he said.

No funds for ‘hazard pay’

While some larger providers have been able to offer slightly higher pay during the coronavirus crisis — DSP’s generally earn between $11 and $13 an hour — McKeon said that’s not an option for a midsized organization like his. “I have no ability to give my staff any kind of hazard pay,” he said.  “And that’s worrisome.”

When day programs were closed in mid-March, the DHS provided two weeks of full funding in advance to help group homes continue operation and maintain a full payroll, something Sellers and McKeon said has been a huge help. The state is now providing another two weeks of bridge funding equal to 75% of providers’ normal billing; a spokesman said the department continues to look for ways to create flexibility and help these agencies continue to serve residents.

“We just don’t know what will happen on week five,” Sellers said.

In addition, Sellers noted that funding is now covering additional costs, like the extra staff needed to care for residents at group homes during hours when they had previously been at group activities elsewhere. McKeon said this alone adds nearly $20,000 every two weeks to his payroll for Avidd’s programs. Plus, food costs — usually covered through residents’ Social Security payments — have also escalated, forcing providers to step in and cover the difference, Sellers explained.

So far, Sellers said her members have been able to keep pace with staff needs, PPE and other resources; McKeon agreed. But both are bracing for what comes next. “We’re one week behind New York. That’s what so terrifying,” he said. “Right now we’re holding our own, but if it begins to get worse, we could have multiple programs that do not have enough staff,” McKeon added.

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