This form, which has now been translated into 12 languages, is designed to be completed by an IDD patient’s family or representatives to help medical staff evaluate the patient’s condition. The form contains several different options in which patients or caregivers can explain how the patient is able to best communicate, whether they have certain triggers and responses to triggers, and other valuable information a healthcare worker may need to know about a patient with disabilities. The form has been disseminated by New York Care Coordination Organizations and hundreds of disability agencies nationwide.

The idea has been so well received that Ballan was awarded a grant by Pfizer to develop a training program for healthcare providers on how to best evaluate and care for persons with IDD presenting with COVID symptoms. Dr. Wackett will also be featured in one of the webinars about the initiative.

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disabilities who get sick with COVID-19 face unique challenges. First, screening for the virus is different for those who are nonverbal or unable to explain their symptoms or how they are feeling. It can take direct knowledge and experience with an individual to know when something is off, says Berhanie Tessema, Clinical Director for RCM of Washington, which is part of D.C.’s network of disability service providers.

People with developmental disabilities are now allowed to have a designated support person with them in the hospital, but hospitalization can present challenges, too, since some individuals have multiple people who help support them in various ways.

“Imagine you are not able to communicate your wants, desires, what’s going on,” says Maheni John, director of nursing for Wholistic Services, which supports 80 people with intellectual or developmental disabilities. “You don’t have anybody that you know in sight, any familiar face. And anyone who comes into the room is fully gowned … It’s definitely a scary situation. So behaviors will tend to escalate because of that … and it really prolongs the hospitalization. But what choice? You know, what can we do?”

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"It’s the same with the nursing home, it’s the prison, it’s any congregant facility. There’s no doubt where you have a congregation of people, that is a place where the virus can transfer," he said.

Asked whether a staffing shortage was contributing to the problem, with reports of some operators using the same employees at multiple facilitates, Cuomo says he’ll look into it. 

"I don't know the policy at OPWDD, but we'll check what the staffing policy is and we'll check if there was a change," he said.

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But the state says it isn’t tracking cases in smaller group homes, citing privacy issues. Some operators of these facilities, however, have spoken publicly about their efforts to contain the spread of the disease.

But community-based group homes have been susceptible to COVID-19 outbreaks too as living quarters typically are shared by several clients.

Because state data about COVID-19 outbreaks has been made public only for larger facilities that agreed to release the tallies, it’s difficult to know how widespread cases are in other residential settings for people with developmental disabilities.

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director of Mobius Inc., which runs day programs and provides other services for people with disabilities in the Damariscotta area. Some of the organization’s clients require help to eat or use the bathroom — assistance that staff members cannot provide from six feet away. Some have underlying medical conditions that put them at particular risk for complications from the coronavirus.

“Until there is widespread testing and surveillance, we don’t have confidence that grouping high-risk people together would be safe,” she said, noting some individuals may have sensory issues that prevent them from being able to wear masks.

Transportation also presents challenges, said Ray Nagel, executive director of the Independence Association, which provides both residential services and community programming for people with intellectual disabilities in southern Maine.

Many clients attend day programs using public transportation, raising the possibility that someone could be exposed to the coronavirus while in transit, he said.

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“I said ‘They need me’ … I can’t see myself not being there for them.”

So Pinilla donned a mask and gloves, hopped on the train and never stopped making the 50-minute commute to Mark and Heriberto’s East Bronx apartment so she can guide them through the pandemic.

“I’m preparing them, explaining to them everyday … how to clean their mask … having them wear gloves, explaining to them why they have to wear the mask and gloves everyday, explaining to them about how to keep social distancing, showing them the distance they have to keep between them and someone else,” explained Pinilla, who has to break down the pandemic how-to’s each day she sees them.

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The sacrifice also is made easier by the special relationships that often exist between residents and workers.

“You develop bonds with them. I always worry about them. Basically, we are their family,” he said.

The so-called “stay in place” approach requires workers to cut themselves off physically from the community, almost as if they were working on an oil well at sea.

The idea is that the coronavirus cases plaguing nursing homes and other group living arrangements usually are brought into those settings by asymptomatic staff members who do not realize they are carrying the virus.

By reducing the number of people going in and out of a building, officials at Trinity hoped to limit the potential exposure to residents.

It appears to have worked. Only six individuals have tested positive for COVID-19 with just one death across Trinity’s 100 facilities housing 650 clients.

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