Howard Anders (or Howard Andersmen, as he called himself) lived a full and happy life. He traveled the world, regularly volunteered around his home town and attended Saturday services at First Hebrew Congregation every week. He was almost always seen in the company of his friend and roommate, especially when attending services.
Around two weeks ago, Anders came out of his shower heavily disoriented, after falling out of bed the previous night, and was taken to Hudson Valley Hospital in Peekskill, NY. He was diagnosed first with pneumonia, without a noticeable cough — and then with COVID-19. Three days later, on April 4, 2020, Howard Anders’ heart gave out. He was 56 years old.
He was mourned by his roommate, his housemates, his fellow congregants and the staff at the Community Living House, a residential living facility where he spent the last 8 years of his life, getting support for his intellectual and developmental disability (IDD). Only Rabbi Dana Bogatz of First Hebrew Congregation was allowed to attend his burial.
“I miss Howard,” Anders’ long-time roommate, who asked not to be named, said. “It hurts to lose him… he was a very kind gentleman.”
Over 30 of Anders’ fellow congregants, former housemates and Community Living House staff joined Traci Wallerstein, his case manager, at an April 15 Zoom-based memorial service.
More than 4,000 people in Westchester County are eligible for services from the N.Y. Office of People With Developmental Disabilities (OPWDD), out of around 140,000 people state-wide. 2,689 live independently, with the help of community centers and check-ins from family and direct support professionals; while 1,626 of them lived in group homes, with up to eight residents and full-time staff. Now, as New York State shuts down for an undetermined period of time, with over 2,000 confirmed COVID-19 cases reported state-wide, the services this community relies on have each had to make tough decisions on how to best serve their clients.
“No matter how creative you get, they are not getting what they need in terms of support,” Wallerstein, a care manager for LIFEPlan CCO NY, LLC., said.
Wallerstein has 40 clients in her caseload, including the late Howard Anders and his roommate. Since Gov. Andrew Cuomo’s March 22 executive order shutting down all non-essential businesses and gatherings, she has been performing weekly assessments of her clients over the phone or, if her client can access and use a computer, on free video chat platforms like Zoom.
However, when Wallerstein brings troubling assessments to her management, their usual response is to refer her to various charitable organizations and free hotlines, she said. She has also not seen any sign of in-house resources from the OPWDD Westchester division for dealing with critical issues, such as clients running low on medication or food. Westchester’s network of caseworkers had already been stretched thin by a wave of resignations late last year — leaving some with no one, officially, to help them. While she is saddened by Anders’ death, she is more worried about people with developmental disabilities who live alone.
“Getting groceries to people has probably been the most difficult thing,” Wallerstein said.
In the absence of resources and guidance from their supervisors, or state agencies like the OPWDD, Wallerstein says caseworkers across Westchester have been helping each other by swapping care delivery strategies for clients living alone — even bringing necessities to their doors occasionally, despite official discouragement.
“I go with what people need,” Wallerstein said. “These people need a lot, but they ask for very little.”
Shelley Shapiro Kessler, parent of a developmentally disabled adult son, has been checking in daily with her son’s group home, run by Young Adult Institute (YAI), since before OPWDD suspended home visits on March 25. While she hasn’t been able to see her son, and worries about his health, Kessler has been pleasantly surprised by how the group home’s residents are taking the disruption in stride.
“They’re doing fine,” Kessler said, citing the YAI supervisor for her son’s home. “They’re doing better than anyone expected.”
However, Kessler reportedly heard stories from other parents about certain residents trying to run away or climb out windows — but these incidents have not been as prevalent as she says people in her social circle had feared.
“They don’t like being inside all the time any more than we do and sometimes have less ability to express that,” she said. “But for the most part… they are adjusting much better than anyone in the system thought they would.”
The Developmental Disabilities Assistance and Bill of Rights Act of 2000 defines a developmental disability as “a severe, chronic disability….attributable to a …combination of mental and physical impairments; is manifested before the individual attains age 22; is likely to continue indefinitely; results in substantial functional limitations in 3 or more of the following areas of major life activity: self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living [or] economic self-sufficiency.”
All day programs for the developmentally disabled, like all other social gatherings, have closed down across the state. These day habilitation programs provide education, recreation, socialization and adaptive behavior practice during the day, all within a supervised environment, according to Hudson Valley Region 211, a free 24/7 hotline that helps direct Hudson Valley citizens to health resources and human services. With these programs closed by OPWDD policy, a major part of the weekly routine and a major source of socialization time has disappeared. Several have moved online, but there are only so many types of activities that can be done through a Zoom chat. Residential facility staff, families and other direct support professionals have had to spend time providing alternate programs in residential settings.
Some organizations that provide day programs have successfully created online platforms for their services. Within two weeks of their March 13 suspension of in-person services, Gigi’s Playhouse Westchester, which provides free, volunteer-run motor skills therapy and one-on-one tutoring to people with Down Syndrome, was able to create and share online versions of many of their programs.
“[We’re] making the best of what we can,” Tracy Smith, the executive director of Gigi’s Playhouse Westchester said. “We didn’t stop serving our families”