Port Jeff Father of Son with Down Syndrome Demands Testing Be Done...

Port Jeff Father of Son with Down Syndrome Demands Testing Be Done at Residential Facilities

Richard Hoey’s son Kevin lives in a Central Islip residential home, and he said its high time facilities like his son’s receives targeted testing. Photo from Hoey

Port Jefferson resident Richard Hoey’s son Kevin lives in a Central Islip residential home for the developmentally disabled. Kevin is diagnosed as intellectually disabled with Down syndrome, autism, behavioral disorders and is developmentally delayed. His mobility is confined to a wheelchair. Due to the ongoing coronavirus pandemic, 21-year-old Kevin has been largely confined to the facility. Family has only been able to communicate with their son via video chat, in which Hoey said Kevin’s attention span is “minimal.” 

“Kids in residential homes, they are all not able to protect themselves.”

— Richard Hoey

“Look to see him, he doesn’t recognize inside that little square TV screen,” Hoey said.

The issue, the parent said, is simply not knowing. Though he said the facility, Eaton Knolls, one run by United Cerebral Palsy of Long Island, has largely been communicative of current goings-on, two staff and one resident have tested positive for the virus. Though staff has been wearing personal protective equipment, they have been “low on the totem pole” in receiving masks and gloves.

“Kids in residential homes, they are all not able to protect themselves,” Hoey said. “They have no idea the dangers with sneezing, coughing or licking things. And they’ll never have any idea about it.”

The Port Jeff resident and his family have created a Change.org petition saying that Gov. Andrew Cuomo (D) should take similar action to Massachusetts and mandate testing at long-term care facilities, such as residential, veteran and nursing homes, for all staff and residents. 

The petition, change.org/p/andrew-m-cuomo-save-my-son-s-life-new-york-group-homes-need-mandatory-covid-19-testing, has already raised over 1,000 signatures since it started Friday, May 1.

The site is operated through the New York State Office for People with Developmental Disabilities, which sets the rules and regulations for facilities such as UCPLI. 

Camille Schramm, the director of development and public relations for UCPLI, said her company, which was mandated to close every service except for the residential homes since March 17, has struggled to get their hands on the necessary PPE. Through donations and requisitions they’ve managed to procure enough masks and gloves for now, but they have struggled to receive the necessary number of gowns.

Otherwise, facilities like hers “should be in the top 10” of long-term care organizations that need targeted testing. Residents cannot simply go to the local pharmacy to get tested, a plan the governor said is currently in the works. Many have major communication problems and mobility issues. Many are confined to wheelchairs.

UCP would not release the number of people at their 31 facilities who have tested positive for the virus, citing resident and family confidentiality, though she said they have fared better than others in the field.

“We’ve been hit, but not as hard as some of the other agencies on the Island due to the safety protocols and precautions we have in place,” Schramm said. 

Currently, the policy for staff who present symptoms isthat they are sent home for at least two weeks and they require a doctor’s note to be allowed back in. After learning of a positive case, UCPLI brought in a company to clean and sanitize the facility, which Schramm said is “costly, especially considering the number of homes we have.” 

For residents that start to show symptoms, they are self-isolated in their rooms. Though if they start to display problems with breathing, they are sent to hospitals where many remain because many also have compromised immunities. 

“They are part of an underserved demographic population that are very challenged by something like this,” Schramm said.

At the end of March, Massachusetts deployed National Guard technicians to long-term care facilities to attempt to test all workers and residents across the state, though things have only ramped up since then. After an April 27 $130,000 state funding plan, the National Guard has completed more than 28,000 tests at 525 care facilities in Massachusetts, according to The Boston Globe. Though the Bay State is ranked 10th in overall nursing home population, currently New York is ranked at the top with over 101,000 patients.

The OPWDD issued a statement saying testing is being prioritized for people receiving supports from OPWDD or service providers who display symptoms, adding that the state “continues to expand testing opportunities as new tests and locations become available.”

“OPWDD is taking the threat of COVID-19 to the people we support and the broader community very seriously and has activated our emergency response team to closely monitor all reports of possible contact within our system across the state,” the statement read. “All staff are fully trained on infection control practices and OPWDD has released guidance to staff and voluntary provider agencies regarding visitation, PPE use and quarantine protocols at our facilities. OPWDD monitors levels of PPE in all of our community residences, both state and provider operated, and has created a 24-hour emergency services number for providers and staff to contact when issues arise.” 

Residential facilities, mostly nursing homes of adult care facilities, have come under severe scrutiny since it was revealed a huge portion of COVID-19-related deaths have come from these places that house some of the most at-risk populations. As of May 5, New York State reported nearly 20 percent, or 4,813 deaths, in New York have come from these locations. Suffolk County has suffered 593, but many suspect COVID-19 deaths have gone unreported at these locations, and deaths may be even higher.

Hoey said targeted testing is the best way to stymie the growing number of deaths at these facilities.

“That will knock down the death rates,” he said. “The only reason [Cuomo is] not doing it because there’s no pressure for him to do this. “

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