Roberta Biscan said her 15-year-old son Connor, who lives in a Hopkinton group home for children with autism, knows a virus is making people sick, but he doesn’t understand why he can’t come home for his usual weekend visits. On the phone, he says he misses going to school, like he used to, and tells his mother he needs a hug.
“It’s extremely hard not being there to comfort or reassure him,” Biscan said.
The social isolation caused by the coronavirus pandemic has fallen especially hard on families with special needs children and adults with developmental disabilities. Like Biscan’s son, many may not fully understand what is happening or why, and being apart from their loved ones amid so much uncertainty has added to their burden.
Group homes halted family visits last month as part of an aggressive effort to protect a vulnerable population from the novel coronavirus. Across the state, more than 11,000 people with developmental disabilities live in group settings.
Yet, despite efforts that have been described as “heroic” by parents and administrators, COVID-19 has spread to staff and residents at some group homes, state officials said.
“Unfortunately, we are going through an unbelievable crisis,” said Kenneth Singer, chief executive of Berkshire County Arc, which operates 42 group homes and an apartment building for residents, ages 22 to 90, with developmental disabilities and brain injuries.
On Friday, state officials said two residents living in group homes overseen by the Department of Developmental Services have died from the coronavirus. Sixty-seven residents and 71 employees have tested positive. They declined to say where they were living or how old they were. Officials did not respond to a request Monday for the latest data.
“We are just hoping the virus affects as few people as possible because they are vulnerable and have medical conditions other than their primary disability," said Leo Sarkissian, executive director of The Arc of Massachusetts.
Operators of group homes and residential schools across the state said they have made every effort to keep residents and staff healthy, while trying to maintain some normalcy.
Residents who routinely spend their days at school or work are now home with staff who serve as teachers, activity directors, housekeepers, and nurses. They organize video chats and phone calls for families. Parents deliver pizza, home-cooked meals, and board games.
In the Berkshires, Singer said five or six residents and a “handful” of staff members have tested positive for COVID-19 in recent weeks, and at one point as many as 80 staff were quarantined because they were exposed to someone who had the virus.
Health officials have directed residents who don’t require hospitalization to isolate themselves at home.
With workers worried about contracting the virus, operators said, maintaining enough staff to keep the group homes open is a major concern.
“This is the mother of all crises in terms of complexities,” said Vincent Strully, founder and CEO of the New England Center for Children, a Southborough-based nonprofit that operates a dozen homes in the MetroWest region for more than 120 autistic students who attend the center’s school.
Strully closed the school on March 16 and staff members now serve on teams that rotate through the group homes around the clock, teaching and caring for students.
Forty-seven staff members who work in the homes are staying in extended-stay hotels at the center’s expense to limit their exposure to the virus and allay fears about spreading it to their families.
On Tuesday, a teacher at one group home became the center’s first employee to test positive for COVID-19, Strully said. The teacher had mild symptoms and is isolated at her home. None of the nine children she had interacted with has exhibited any symptoms and are remaining there on the advice of state health officials, he said. They are being closely monitored by staff who are wearing masks and gowns.
“We are becoming some version of a hospital and a school," Strully said.
He said he will only close the group homes as a last resort because the children, some who are nonverbal and have severe and dangerous behavioral issues, need to be there. Most of the staff have chosen to work with autistic children as a career and are committed to keep working, despite the risk.
“We’re not going to give up easily," Strully said. "We are going to do it as long as we can staff shifts safely.”
Melmark New England operates a school, now closed because of the pandemic, and 10 homes in Massachusetts for children and adults with intellectual disabilities and autism. It closed one of its homes in Essex County two weeks ago after a student tested positive for COVID-19.
The student was believed to have been exposed to the virus at a community medical center, according to Rita Gardner, chief executive of Melmark, and Helena Maguire, the executive director. Fifteen staffers were placed on a 14-day quarantine and were recently cleared to return to work, they said.
The group home underwent a deep cleaning and may be used as an “isolation” home for any students who test positive for COVID-19 and can’t go home or have no home to go to, Gardner said.
As of last week, more than 20 staff members had confirmed cases of the virus, and on March 31, a resident at one of Melmark’s adult group homes in Essex County also tested positive, according to Gardner and Maguire.
That resident is being isolated at the home, where he has his own bedroom and bathroom, based on guidance from the CDC and local health officials, Maguire said.
Gardner said she has been inspired and impressed by staff, who are resilient and adept at working with children with complex needs.
“This has been a very challenging time and they have certainly risen to the challenge,” Gardner said.
Kathleen Jordan, chief executive at Seven Hills Foundation, which is based in Worcester and operates 115 group homes, said the company has been aggressively seeking protective equipment for its employees. The company banded together with about 65 agencies, including some competitors, and placed an order with a Chinese distributor for nearly 300,000 N95 masks, which will be distributed to homes and social service agencies across the state.
So far, two staff members, out of a workforce of nearly 5,000, have tested positive for the virus. There have been no confirmed cases among residents, but testing has been limited, she said.
“Unless the person is exhibiting significant symptoms, they’re telling us just keep the person comfortable, use precautions and bring them in if their conditions worsen,” Jordan said.
Tracy Atkinson hasn’t been able to visit her son Michael, 27, who lives in a group home in Westwood, for two weeks. He doesn’t know why they can’t meet, so on video chats she does her best to reassure him.
"When your loved one doesn’t have the capacity to understand [what is happening] it’s particularly heart-wrenching,” she said. “Being able to see him smiling and him enjoying hearing us and seeing us has been a lot of comfort right now.”
Regina Kruger couldn’t be with her daughter, Megan, on her 18th birthday last month. She left a cake and presents on the doorstep of the Framingham home for autistic children, operated by the New England Center for Children. She rang the bell, then waited 6 feet away as a staffer picked them up and waved.
Throughout the day, they celebrated via FaceTime. Megan, sporting a sparkly tiara, blew out the candles as her mother played the piano and sang “Happy Birthday” miles away in Shrewsbury.
“I literally was so filled with joy," Kruger said. "I started jumping up and down when I saw my daughter so happy with her teacher.”