By Deborah Jeanne Sergeant
A new study published in Disability and Health Journal of 20,000 New Yorkers 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.
“All congregant settings put people at more risk,” said Gregg Beratan, director of advocacy for the Center for Disability Rights, with offices in Rochester, New York, Geneva and Corning. “People don’t have control over who feeds them, prepares their food or touches their body.”
During the quarantine, limiting outside contact such as day programs, 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.
Beratan said that offering care in their own homes represents the best way to keep healthy persons who have disabilities.
“Everyone’s first instinct is to improve this model, but the model is broken,” Beratan said. “Flu has gone through congregant settings before only now it’s more deadly and seemingly more contagious. The model itself is broken. If you want to value disabled lives and want people to live, offer home- and community-based services to live in their own homes. This is what’s needed, not a better congregant setting.”
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.
“The governor tried to imply on Meet the Press that group homes are just as safe, but they aren’t,” Beratan said. “Living in their own homes is the way to keep people alive.”
He doesn’t think enough attention has been giving to group homes compared with nursing homes; however, many of the same risk factors are present in both.
Marisa Geitner, president and CEO at Heritage Christian Services, which operates 63 group homes from Rochester to Buffalo, 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.