Group Home Staffing Crisis Upends Life For Woman With Down Syndrome
SYRACUSE, N.Y. — Laurie D’Amico, who has Down syndrome, lived in the same Oswego County group home for 22 years. Laurie, 49, had her own bedroom and familiar staff who were like family and kept her on a set routine.
All that ended Dec. 16 when the group home in Palermo was temporarily shut down because there wasn’t enough staff to care for its residents with developmental disabilities.
The state uprooted D’Amico and two of her housemates and moved them into a larger group home in the nearby town of Mexico.
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The transition has been turbulent, according to Kathleen D’Amico, 81, of Cicero, Laurie’s mother and legal guardian.
Laurie and her housemates were quarantined less than a week after the move when a resident tested positive for COVID-19. She’s not sleeping well because she now has to share a bedroom with a woman who groans and grunts at night. Laurie has begun wetting her bed, something she had not done in 30 years.
“She’s trying to get used to everything — a new place and new staff,” D’Amico said. “And now she can’t even sleep at night.”
The Palermo group home is one of 57 statewide, and 10 in Central New York, temporarily shut down in recent times by what the state Office of People with Developmental Disabilities calls a “workforce shortage of crisis proportions.”
OPWDD spokeswoman Jennifer O’Sullivan said her agency is temporarily consolidating some group homes “until such time that we can achieve safe and appropriate staffing levels.”
The crisis comes at a time when hospitals, nursing homes, restaurants and many other service industries also are reeling from staff shortages caused in part by the COVID-19 pandemic.
In group homes, low wages for demanding work set the stage for the labor shortage, experts say. Group home workers help dress, toilet, bathe and provide other care to residents with Down syndrome, autism and other developmental and intellectual disabilities.
The pandemic just made the staff shortage worse. Mandatory overtime for workers in short-staffed state operated group homes has compounded the problem by causing worker burnout.
Gov. Kathy Hochul recently announced the state will use $1.5 billion in federal money to help fix the problem by paying retention bonuses to group home workers and developing long-term recruitment and retention strategies.
State Sen. John Mannion, D-Geddes, is pushing for the state to provide an additional $500 million annually to boost pay for group home workers.
In the meantime, the state Office of People with Developmental Disabilities, which oversees group homes, and other providers are grappling with nearly 2,000 group home staff vacancies statewide. The office is temporarily closing some sites, like Laurie’s longtime home, and consolidating them with others to maintain safe staffing levels.
Wages for group home staff stagnated for years while starting pay for many other jobs increased.
“The jobs here are more challenging and complex than minimum wage jobs,” said Ellen Gutmaker, executive director of ARC of Onondaga, which operates 21 group homes in Onondaga County. “It’s a rewarding career choice and needs to be funded in a way so staff can live on what they make.”
About 25% to 30% of ARC’s group home jobs are vacant. To help fill some of those vacancies ARC recently raised the starting hourly pay for group home workers to $16, up from $14. Gutmaker said the $2 hourly increase alone won’t solve the problem, but “it’s a start.”
The state operates 1,102 group homes for 5,576 people with developmental disabilities. Nonprofit agencies funded by the government, such as ARC of Onondaga, operate another 5,836 group homes that serve 28,517 people with disabilities. In Central New York there are 461 group homes with 2,254 residents.
D’Amico makes the 20-mile drive to pick up her daughter every other weekend. She brings Laurie to her Cicero home for overnight visits. They also talk by phone at least two nights a week.
D’Amico is happy with the care her daughter has received during most of her 22-year group home tenure.
But D’Amico started worrying two years ago when she began seeing a lot of staff turnover and vacancies left unfilled. Some staffers quit after growing weary of being forced to work two 10-hour shifts in a row when their replacements did not show up.
“These people were stretched to the ultimate limit during the pandemic,” D’Amico said.
The four-resident group home in Palermo was supposed to have a minimum of two staffers on duty at all times. But often only one staffer was available on weekends.
Such skeleton staffing is dangerous, D’Amico said.
If one resident became severely ill and there was only one worker on duty, the resident would have to be sent alone by ambulance to a hospital because the other residents could not be left by themselves, she said.
The use of mandatory overtime increased during the pandemic, according to Mark Kotzin of the Civil Service Employees Association union, which represents group home workers.
“Mandatory overtime leads to injuries or burnout, which in turn leads to more people being out of work and less staffing,” Kotzin said. “It has an impact on workers and the quality of care received by individuals under their care.”
The Office of People with Developmental Disabilities said in a statement mandatory overtime is only used if there is no other option to ensure resident safety.
The Mexico group home Laurie and two of her longtime housemates moved into has nine residents.
When she calls the home, D’Amico said she hears some residents yelling and screaming. She said a staff member told her Laurie and the two women she lived with at the Palermo group home often cover their ears with their hands.
“They are not used to the noise level,” D’Amico said.
At the old group home Laurie used to shower and wash her hair every day. After moving into the new place, Laurie did not get a shower for several days, D’Amico said.
Laurie normally goes to a day habilitation program at Oswego Industries every Monday and Friday. She didn’t attend the program the first Monday after the move because staff did not check her schedule, D’Amico said.
When Laurie moved, D’Amico sent three pages of notes to the new group home to help familiarize staff with her daughter.
D’Amico said she expected the transition to be difficult because Laurie dislikes change. But she never expected the transition to be so chaotic.
D’Amico said the situation is stressing her out.
“She was in a really beautiful situation that I had no worries about. The staff was wonderful. She was well taken care of,” D’Amico said. “Now it seems there is no control.”
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