The Other Side of the Front Line

At first, they thought they were dealing with seasonal allergies.

But when Robert's symptoms worsened and he developed a fever, Kisha Kennedy VanHolt said she knew that the group home she managed for individuals with intellectual and developmental disabilities was dealing with their first case of COVID-19. They called 911 immediately.

After being admitted to the hospital, Robert died of complications from COVID-19.

The other residents in the home and one staff member also started to display symptoms, with the staff member later testing positive for COVID-19.

"But the rest of the individuals that stayed back, they didn't develop fevers, but they had other things," said Kennedy VanHolt. "They were very fatigued. They were not eating. They just were not themselves and because we work here with them every day, we knew that things were just not right."

The spread of the virus throughout group homes is the reality for many organizations that provide residential services for individuals with intellectual and developmental disabilities (IDD), like AHRC New York City, the organization Kennedy VanHolt works for.

Due to the pandemic, these organizations have had to change the way their group homes are run and also help the residents cope with the new reality of the pandemic. At first, they were faced with the lack of access to testing, leaving staff worried that asymptomatic residents or staff might pose a health threat.

"A Perfect Storm"

Marco Damiani, the CEO of AHRC New York City, one of the largest organizations in New York serving individuals with IDD, said the individuals they deal with are especially vulnerable to the virus as they often have other underlying health conditions like asthma, diabetes and heart disease.

“When the virus started to move around New York City, we kind of were a perfect storm,” said Damiani. “Unfortunately, we have lots and lots of people that have health risks, they’re immunosuppressed in some cases and have other conditions.”

Out of the 740 individuals with IDD who live in one of AHRC New York City’s 150 residences, 17 have died from coronavirus, 105 have tested positive and another 160 have “COVID-like” symptoms. Their staff has also been affected: four staff members have died and 83 have tested positive for coronavirus.

Damiani said that at first AHRC New York City did not have access to tests for their population despite the number of sick residents they have. People were only getting tested if they were sent to the hospital, which Damiani said led to an undercount of the virus in the group home. Now AHRC New York City said they are able to provide testing.

“I am pleased to say that we have formed a good relationship with a major lab and urgi-care network to provide both virus and antibody testing for the people we support and for our staff,” said Damiani.

If someone starts to display symptoms, Damiani said they are essentially treated as though they have been tested positive and are heavily treated and monitored by staff.

The support professionals who assist the individuals in the home are not registered nurses. Eventually, Damiani said, AHRC New York City had to hire nurses to help support the staff and provide more clinical interventions.

Denise Flores, the assistant vice president for the developmental disabilities’ division at The New York Foundling, said that during the beginning of the pandemic they had to ration out the protective equipment they had. They would only give masks, gloves and gowns to residences with sick individuals.

“I mean we don’t have any to waste, but we do have a system in place that everyone has now either face shields, gowns or masks,” said Flores.

Now most organizations for individuals with intellectual and developmental disabilities have enough protective equipment to hand out to their staff and residents.

Magaretta Style, a transitional project coordinator and residence manager for The New York Foundling, said it was vital that she have masks for her staff and residents, and that the administrators understood that. In the residency she manages, one of the individuals is an essential worker. So they had to make sure that he had the proper protective equipment to go safely to work.

Style’s residency does not have a washer or dryer. Once a week staff go out with the residents to a laundromat and have to make sure that the residents are wearing protective equipment and practicing social distancing while outside.

"Like Part of Our Family"

Yet finding and adjusting to the new reality hasn’t been easy for the individuals the homes' staffers work with.

Style said that it has been a struggle to get the residents to understand the importance of wearing their protective equipment properly and washing their hands.

“But now it's almost like a reality, they're learning a new reality of, you know, this is what I have to do in order to go wash clothes,” Flores said.

Leslie Pantor, the manager of a home in Brooklyn for AHRC New York City, said that it has been hard for the residents to adjust to being stuck inside every day. She and her staff said that they are constantly trying to find new ways to keep the residents entertained and take their minds off the death of some of their friends.

One of the residents in Pantor’s residence died of complications from coronavirus, and she said it was like losing a family member.

"You know the guys here, they're like part of our family. You know, it's very difficult, extremely difficult and painful to watch."

Alicia Sy, the manager of AHRC New York City’s Greenberg Residence, said that while she does have sick individuals in her home and even one in the hospital, she and her staff have also been finding ways to keep the residents engaged and find a sense of normalcy.

On Easter she recalled that one of the individuals had asked her if the festivities were canceled because of the virus. She told them that they would find a way to celebrate it and still practice social distancing.

“So, I asked the staff to help me and they went and purchased the candy and stuff and we did an Easter egg hunt,” said Sy. “We have a big backyard, so they weren't so close together. They were far enough apart from each other and they were able to do their Easter egg hunt.”

Magaretta Style said that in her group home many of the residents are still getting used to the fact that they cannot attend their day programs, where they were able to interact with others and see their friends. A lot of them were also active members of their community and were used to going out on a daily basis.

"There are some of them that are not grasping, that don’t realize that their life has been changed in a split second and they really can't tolerate it,” said Style. "So, every day, myself and my staff has to be coaching them [on] coping skills."

Care Packages

Flores said that The New York Foundling has also encouraged the individuals in their group homes to use Zoom or FaceTime to keep them connected with their friends and family.

“We've also, with some of our older individuals, they write letters, they do pictures where they mail them out and they know that the staff are going to mail them out,” said Flores. “Parents have been sending care packages in.”

In some AHRC New York City homes, residents have been participating in virtual yoga sessions and other online classes as a way to stay connected.

Technology is also being used to help provide staff with medical support from doctors as they work to assess and treat sick residents.

With hospitals also limiting the number of people let into the hospital as a health precaution, staff members have to rely on technology to help them offer triage support to individuals with IDD sent to the hospital.

Damiani said that many AHRC New York City staff feel helpless when they send residents to hospital, where they may have difficulties communicating with the doctors and nurses due to their disabilities.

Grace Duncan, a direct support professional at one of AHRC New York City's residences in Brooklyn, said that when one resident was admitted to the hospital, none of the staff were allowed to be by her side to offer support.

"I know it must have been very confusing for her,” said Duncan. “It's really hard when these guys have to go by themselves because [they] have special needs and they are used to seeing and having support around them. But on the other hand, I can understand the situation because we're not dealing with normal circumstances now."

Damiani said everyone at AHRC New York City is now just trying to learn as much as they can about the virus and how to protect their population. They are also working to strengthen their systems and financial situation especially if the virus comes back with the same ferocity next fall.

For now, Kisha Kennedy VanHolt said she and her staff had to fight to “bring back life to the program” after the virus made its way through the group home.

Though it took a while, eventually the residents in the home slowly started to recover and act like themselves.

“I came in on a Sunday after two days off and one of my individuals had a huge mess in her bedroom with coloring books and crayons and I was so happy to see the mess because it felt normal again.”