ALBANY — Group homes that care for 40,000 disabled adults and youths statewide were ordered along with hospitals to use masks and gowns during the COVID-19 pandemic, but the homes weren’t a priority to get essential gear during the height of the virus and faced shortages, according to a federal complaint.
The complaint by Disability Rights New York, a federally funded nonprofit watchdog, claims the state discriminated against people with disabilities and workers who care for them. The action seeks to place group homes on the same priority status as hospitals, nursing homes, emergency medical services and dialysis centers for personal protection equipment, or PPE, such as masks, gowns and shields.
Disability Rights New York “has received complaints that people with (developmental disabilities) in congregate settings have become sick with COVID-19 and already some of these individuals have died due to complications from the virus,” stated the April 7 complaint.
Residents depend on staff for help in washing, toileting, dressing and eating. The complaint states that maintaining social distancing of 6 feet is impossible and some residents have weakened immune systems and other underlying medical concerns. The state deemed workers "essential" and therefore they had to work, “yet, New York state has not taken necessary steps to ensure that people with (developmental disabilities) and the people who care for them are prioritized for receipt of critical PPE,” the complaint said.
Operators of group homes at the apex of the virus — March through May — had to scrounge, scouring pharmacies for masks, often paying price-gouging costs, pleading with county disaster offices, and wearing homemade face coverings and disposable protection that sometimes had to be reused, according to interviews with Disability Rights New York, group home operators and their residents’ advocates.
Although the worst of the crisis appears over, Disability Rights New York said the state must add group homes to its priority agencies before the next possible wave of the virus.
"The inability to obtain critical protective gear for staff and residents magnified their exposure and risk," said Timothy A. Clune, executive director of Disability Rights New York. "By designating these congregate settings as a priority to receive PPE, our clients at least have a fighting chance.”
The U.S. Health and Human Services Department hasn’t yet ruled on the complaint and didn’t comment. Disability Rights New York is mandated by federal law to protect and advocate for people with disabilities and has authority to visit and investigate group homes.
The state said it took action as officials were frantically trying to buy enough personal protection for hospitals amid a global shortage.
“At the onset of the current public health emergency, OPWDD responded by activating our emergency response team to closely monitor all reports of possible contact within our system across the state and created a 24-hour emergency services number for providers and staff to call with any issues or PPE needs,” said Jennifer O’Sullivan of the state Office for People with Developmental Disabilities. “We continue to monitor the needs of our providers."
“This vulnerable population has historically been, and unfortunately remains, overlooked and unrecognized,” said AHRC Nassau executive director Stanfort J. Perry, who said his agency had to pay high prices for PPE without reimbursement. “This oversight must be corrected. If not, it shows a deplorable disregard for some of the most vulnerable in our community and the staff who support them.”
Of the 5,000 disabled people in group homes on Long Island, 392 tested positive for the virus and 75 died as of May 18, state records show. Statewide, of the 38,000 people in 7,250 group homes, 2,101 tested positive for COVID-19 and 342 died due to the virus as of June 7.
Advocates fear lack of protective gear worsened the crisis.
“I was concerned they didn’t appear to have the things they needed,” said Harvey Weisenberg of Long Beach, a longtime advocate for people with disabilities when he served in the state Assembly, whose son, who has cerebral palsy, lives in a group home. In April, the former assemblyman donated $10,000 to buy masks.
The workers’ union also remains concerned.
“There was definitely not enough PPE for our members,” said Jane Briggs of the Public Employees Federation union. She said some workers had to use a single mask for a week and there were no face shields, goggles or gowns available during the worst days. The union has purchased thousands of masks.
“The situation has improved,” she said. “In terms of a second wave, it appears OPWDD does have an adequate supply of masks.” But she said current masks are substandard and there is not enough testing of staff and residents.
“We have been speaking weekly with OPWDD about these concerns to help ensure the agency will be better prepared should a second wave occur,” Briggs said.
Unlike most group homes, the Independent Group Home Living Program, which serves 5,000 children and adults in more than 80 group homes in Suffolk County, has a warehouse to store material and purchases bulk.
Although some PPE came from the state, the network pieced together resources through Suffolk County, vendors, volunteers and ingenuity.
“We had no issue,” said executive director Frank Lombardi. “I know other agencies have … we helped others as much as we could.”
He said parents knitted masks and one staffer made shields out of 2-liter soda bottles. When the price of gowns shot up to $8, the center bought disposable rain ponchos for 37 cents each.
“You have to do everything possible you can to keep your people safe,” Lombardi said.