By Deborah Jeanne Sergeant
Anew study of 20,000 New Yorkers published in Disability and Health Journal indicates that people who have developmental disabilities and are living in group homes have more than double the rate of death than the general population.
Among those whom the Centers for Disease Control and Prevention states are at higher risk include:
• People who have limited mobility or who cannot avoid coming into close contact with others who may be infected, such as direct support providers and family members
• People who have trouble understanding information or practicing preventive measures, such as hand washing and social distancing
• People who may not be able to communicate symptoms of illness
These are true of many individuals who live in group homes for persons with developmental disabilities. The congregant nature of living in a group home, along with the continual circulation of employees who bring in outside exposure, also contribute to higher risk. Not all residents can wear masks because of health issues.
This population also tends to experience higher rates of co-morbidities that have been associated with worse COVID-19 cases, including hypertension, heart disease, respiratory disease, and diabetes.
Jennifer O’Sullivan is the director of communications with New York State Office for People with Developmental Disabilities (OPWDD) in Albany.
“OPWDD has taken the threat of COVID-19 to the people we support and the broader community very seriously and all staff are fully trained on infection control practices, PPE use and quarantine protocols,” O’Sullivan said. “The agency activated our emergency response team at the onset of this public health emergency to closely monitor all reports of possible contact within our system and created a 24-hour emergency services number for providers and staff to call with any issues. We continue to monitor the needs of our providers and staff to ensure the continued health and safety of the people we support as we return to a new normal.”
Similar to nursing homes, group homes have many factors that increase risk, yet little attention has been given to group home residents’ risk compared with nursing home residents.
People identify with hospitals and nursing homes because they’ve been in them,” said Jeff Paterson, CEO of Empower in Niagara Falls. “They’ve been there and have visited people. Our houses have no signs and they blend into the community so they feel they belong to the community. Because of that, they’re not recognizable to other people in the community.”
Empower operates 10 certified group homes throughout Niagara County supporting people who live in group homes.
Though group homes receive little press, Paterson said he is proud of how employees have worked to keep everyone safe.
“We were able to put a lot of safeguards into place,” Paterson said. “We’ve had no cases of COVID in our group home.”
In congregant settings like group homes, residents don’t have the opportunity to practice social distancing. Some may not understand the importance of hand washing and may not be capable of washing their own hands or wearing a mask.
During the quarantine period, limiting outside contact, visitors and the number of different staff members coming into the home are just a few ways that group home directors have tried to curtail the spread of COVID-19.
Paterson said that at Empower, the staff prepared off-site quarantine locations in case someone exhibited COVID-19 symptoms.
All of their efforts have paid off; however, it wasn’t easy.
“We’ve been chronically underfunded by the state so we have a serious staffing shortage and our wages have lagged behind,” Paterson said. “It’s challenging to keep the workforce safe and wanting to report to work. If you had employees with any cold and flu-like symptoms, we want them to stay home.”
The cost of PPE rose as supply dwindled and Paterson said that although Erie County helped, the state of New York did not. He added that the state is planning to cut funding by 2% to 5% by Oct. 1, a move planned before the pandemic.
“So far, they’ve been refusing to relent on this,” Paterson said. “The state received additional Medicaid federal funding through the CARES Act but did not allocate any of that to developmental disabilities, despite that we operated on Medicaid funding. The state is leaving us high and dry.”
He said that Gov. Cuomo indicated even further cuts of up to 20% could be on their way unless the federal government doesn’t provide significant aid to the states. The budget cuts will make it even harder for Empower to continue to provide the extra measures needed to keep group home residents safe.
Marisa Geitner, president and CEO at Heritage Christian Services, which operates 63 group homes from Buffalo to Rochester, believes that the factor of co-morbidities is why group home residents face such a higher risk than the general population.
“Early on, we limited the amount of staff in and out of the program,” Geitner said. “The first two and a half months, we relied on a lean staff to keep the transition in and out of the program to a minimum.”
When the pandemic first started, Heritage also started a 24/7 hotline to answer questions posed by employees and residents’ family members. Heritage also developed an inventory-based system to stock and distribute essential items and signed up each group home with an Instacart account to limit exposure.
Like other such organizations, to help reduce the risk, she said that Heritage follows social distancing, masking, sanitation, and hygiene protocols as well as employee screening.
Photo: Jeff Paterson, CEO of Empower in Niagara Falls (right) with Dan Cecere and Anthony Salvo.