On the best of days, Beth Kuerzdoerfer worries about her daughter, Grace Lipczynski, who lives in a group home for the developmentally disabled in North Buffalo.
Lipczynski, 22, who cannot talk, walk, wash, brush her teeth or toilet herself, depends on workers at the People Inc. home on Hertel Avenue for her very life. She is nourished through a feeding tube.
Her mom calls her “Amazing Grace” because all of the medical challenges she has faced since birth, including cerebral palsy, epilepsy, osteoporosis and a deformed spine.
The Covid-19 pandemic has given Kuerzdoerfer even more reasons to worry about her daughter.
Since March, 2,160 group home residents and 2,599 group home employees in New York have been infected with Covid-19, according to the State Office for People With Developmental Disabilities, which regulates the homes.
Covid-19 has killed 352 of those residents, the state agency said. It has not released figures for how many group home employees have died.
“Every day, I worry that Grace is going to catch the virus, or one of the people who takes care of her is going to catch it and bring it into the home,” Kuerzdoerfer said. “And I can’t visit her right now. It scares the living hell out of me.”
Across the state, 38,000 women and men live in 7,250 group homes monitored by the OPWDD. At least 4,000 of these individuals are in Western New York.
The state agency said it could not provide a breakdown of infections or deaths based on individual homes, counties or regions where they occurred.
Risks in group homes
Covid-19 has made life more complicated – and dangerous – for the residents and the workers who care for them. Many group home residents are especially susceptible to Covid-19 because they suffer from respiratory illnesses, diabetes or other underlying medical conditions.
Officials of People Inc. – who run 137 group homes, more than any other agency in Western New York – say they are aware of the dangers and are doing everything they can to prevent infections.
Acting on orders from the state, they have stopped friends and family members from visiting residents of the homes. They have also put a stop to outings – such as trips to movies, shopping malls and parks – that the residents used to enjoy. Many residents worked in sheltered workshops; those activities have also been put on hold.
“Our employees wear masks all the time and gloves when needed,” said Thomas L. Ess, emergency preparedness coordinator for People Inc. “We’ve spent close to a million dollars on protective equipment for our workers, and that is a lot of money for a not-for-profit.”
Keeping workers and residents safe “has been a Herculean effort, but there are still a lot of unknowns,” Ess said. “We’re essentially telling our people, ‘This is a very dangerous situation, now come in to work.’”
Although workers wear masks, most of the residents do not.
Attempts are made at social distancing, but that is not possible for those residents such as Lipczynski who need total care. Lipczynski has to be checked every 20 minutes, every day, whether she is awake or asleep, to make sure she is not having seizures.
“Grace is totally dependent on those workers, God bless them,” said Kuerzdoerfer, who lives in Cheektowaga and is a full-time employee of the town. “They are phenomenal. I can’t say enough about them.”
Kuerzdoerfer said she had a major scare in March, when her daughter developed a fever and respiratory problems.
"They took her to Buffalo General Hospital for two days and tested her for Covid-19. She tested negative, she got better, and they returned her to the group home," Kuerzdoerfer said. "I was scared to death."
A risky job
Roshay White said she knows she is putting herself at risk when she goes to work at the People Inc. home on Abbott Road in Lackawanna.
"I have three little girls at home, and I have to be careful," said White, 27.
White said she truly enjoys serving the men and women who live in her group home. "You really get to know them, their habits, what they like and don't like ... little things that calm them down," she said. "It's like family."
But White also believes she and other group home workers are vastly underpaid.
She declined to divulge her current pay rate, but People Inc. officials said direct support professionals, such as White, start out at the state minimum wage in upstate New York of $11.80 an hour. Sources familiar with group homes said most workers at homes run by nonprofit agencies make the minimum wage or slightly above that.
"We do get decent health care and other good benefits from People Incorporated, but even before the pandemic, we were underpaid," White said. "We're responsible for other peoples' lives."
People Inc. has given a $2 hourly raise to workers during the pandemic, said Rhonda Frederick, People Inc.’s president and chief executive officer.
The pay rate for direct support workers is "woefully inadequate," Frederick said. She said her agency would like to pay more but is limited by Medicaid, its main source of funding.
More than 40 agencies run group homes in Western New York. All group homes in the state are run by nonprofit agencies or the state itself. Most are in residential neighborhoods. They usually have six to eight residents.
Most agencies try to have at least three or four staffers on duty during the daytime hours. One staffer often works alone on the midnight shift.
There have been horror stories at some of these facilities in New York State.
Last September, the state paid $6 million to settle a lawsuit alleging that developmentally disabled women in a group home in the Bronx had been beaten, neglected and spat upon by employees.
Buffalo attorneys Terrence M. Connors and Joseph D. Morath Jr. have handled two successful multimillion-dollar lawsuits against operators of group homes in Western New York who were accused of cruelty or neglect of developmentally disabled residents.
Some group homes are much safer, cleaner and are run more efficiently than others, Connors said.
“These group homes provide a great service, and it’s a tough job, but families are trusting the lives of their loved ones to these homes,” Connors said. “We investigated homes that were understaffed, homes that didn’t follow their own policies and procedures, and homes where the staff told us there was little or no training.”
“If you are placing your son or daughter into one of these homes,” Connors said, “be vigilant about checking the place out. Visit there several times and talk to the staff.”
With family members barred from visiting group homes, they are less likely to learn about problems in the facilities, said Zoe Gross, operations director for the Autistic Self Advocacy Network, a national organization.
No visits because of Covid-19
Family members have been unable to visit loved ones in New York state group homes since the middle of March. The state has banned visits in an effort to prevent the spread of Covid-19.
That has been upsetting for Robin Kennedy and her husband, Leo, who miss their son, Patrick, 41. Patrick has Down syndrome and respiratory problems. He lives in a People Inc. group home in West Seneca.
"The pandemic has been hard on him, and hard on me, too,” said Robin Kennedy, who hasn't seen her son since March. “I'm used to visiting him two or three times a week."
Before Covid-19, she enjoyed taking her son grocery shopping, to restaurants and to all his regular doctor's visits. Those activities have also been curtailed.
"Patrick usually goes to work 30 hours a week. He plays in two baseball leagues and a soccer league. He loves to go out for shopping, movies and restaurants. He has 10 nieces and nephews and a great-niece he likes to see. He can’t do any of these things now," Robin Kennedy said. "I tell him he can’t go out because he might get sick, but I don’t think he really understands it.”
The visitor ban has been tough on Kuerzdoerfer, too.
She has not seen Lipczynski, her daughter, since a brief, very emotional, socially distanced visit on Mother's Day.
"She was in the doorway with an aide. I was on the porch, just trying to tell her how much I love her and miss her," Kuerzdoerfer said.
Kuerzdoerfer tries to use FaceTime to stay in touch, but she said her daughter rarely reacts to it.
Stephanie Piniewski runs the group home in Lackawanna where White works. Eight developmentally disabled adults live there.
“It’s a challenge to keep people busy and content, but we’re doing OK,” Piniewski said.
On a recent sunny day, two residents performed on the porch with a karaoke machine, belting out Elvis Presley songs and some tunes from the “Grease” movie.
Others used chalk to draw designs on the sidewalk, while three men shot baskets in the backyard.
“I play on a basketball team,” said one of the shooters, a cheerful guy named Dave, who was decked out in a bright orange basketball uniform.
A reporter asked him why his team hasn’t been playing lately. He thought about the question for a few seconds.
“I don’t know,” he answered.