Members working at the Office for People with Developmental Disabilities provide a host of services to New York’s most vulnerable population. During the October 2021 PEF Convention in Niagara Falls, members sat down with PEF to discuss how the pandemic and short staffing impact their jobs, why they do what they do, and what their jobs mean to the communities where they live and work.

How does COVID and short staffing impact your work?

“Prior to the pandemic, my job encompassed overseeing health care for individuals with developmental disabilities in the community. During COVID, it was very difficult to have that connection with the individual and monitor them. A lot of the health care needs of these individuals were compromised.

“COVID was extremely bad in my area. We lost several individuals and several staff. Not to mention, the saddest part for me, watching a young 20-something staff member who is never going to be able to work again because they can’t live without oxygen or other treatment. A friend who is a nurse brought it home to her family and her husband died. A few months later, her son died. She never got sick. She has that guilt and it’s a guilt that as a nurse we carry all over because we try to do everything we can, but people contracted it.”
Carolyn Cole, community health nurse, OPWDD

“During the pandemic, we did see that rather than seeing some of the recipients of services in person, we either speak with advocates over the phone or their families by phone. It changed the way we do things because many of the programs they benefit from have changed to virtual or something similar. When folks are used to a certain routine and that routine is disrupted, it does have an impact on the individual.”
Louisa Scott Cooper, DD specialist, OPWDD

“I’m a physical therapist and part of what I do is oversee the adaptive equipment department, which is a very small department that helps modify wheelchairs, beds, sets up alarms, allows the patients that we serve to have as much independence as possible. To have as much safety as possible. Folks that we serve in the developmental centers and group homes, the whole idea behind our services is to provide as much inclusion, as much normalcy, as possible so that folks can integrate into the world.

“As a clinician, in the old days, the patients would come to me. Short staffing makes it really difficult for patients to be able to come to me, so instead I travel to all of their homes. I’m more of a home care therapist, which is great, I can see the environment they live in, assess and adapt to their needs within their living environment. But that extra component of travel stretched the day out much longer than it should be. I can’t see as many patients in a true eight-hour day. Our clinicians are professionals that make sure they get their services at the end of the day in any way that is possible. We go above and beyond to do the work of the people so that they can receive the services that make them healthy.”
Scott Dobe, physical therapist, OPWDD

“We are a secure facility for individuals who are both developmentally disabled and have a psychiatric diagnosis. Individuals that live with us are there most often under court order because they are a danger to themselves or society or they just need that intensive treatment so they can go back into society and be successful. We are understaffed at the moment. We’re a department of four and we have three social workers, so we have 16 to 17 individuals apiece.

Services outside in the community are very scarce and very difficult to come by, especially the agencies that are voluntary. They don’t want to take our individuals because of their past behaviors, and we really have to sell them on how well they’ve done. It’s difficult. We can’t discharge them until we have a concrete plan in place for them with a place to live and programming and the wait is so long because with the pandemic and the change in staffing and other agencies being short staffed, sometimes they just stay longer.”
Suzanne Thomas, social worker assistant, OPWDD

What does your work mean to the community?

“As a parent of a developmentally disabled child, I also travel in disability advocacy realms and in those areas a lot of what I hear from other parents, and myself too, is: are these services going to be around for our children? If you don’t have people willing to take those jobs, certainly you can’t provide those services. My one friend and I have autistic children who are teenagers and we both half-jokingly say we can never die. We have to be here forever to take care of them, because who’s going to be around to do it? Realistically, that is something you worry about.”
Donna Karcz, habitation specialist, OPWDD

“Staffing issues existed long before COVID. They are closing homes. They are calling it temporary suspension, but that means nothing to someone who doesn’t understand our system. In a group home with 10 people, if they temporarily suspend services, everyone who lives there has to live somewhere else. They may have lived in that home for 28 years and are moved to somewhere they have never been. We are disrupting peoples’ lives. This is beyond a problem; this is now a crisis.”
Gregory Salameda, psychologist, OPWDD

“We are so short-staffed. That means there are fewer beds, permanent and residential for those families waiting for services. We have families waiting many years for services. We have lost many 24-hour nursing group homes because of our inability to retain LPNs and RNs. These people are going into the nursing homes or hospitals. We’re losing services. We used to be the Cadillac of services, New York State. We are barely keeping up.

“Most of my people don’t have the ability to take care of daily needs, to brush their teeth without assistance, to manage medicine without assistance. Family members leave jobs because there is no one to take care of them. A lot of talented people can’t work because they don’t have anyone to take care of their children.”
Leisa Abraham, psychologist, OPWDD

“Younger children who are being homeschooled with disabilities, they don’t have the staff to come and help them with afterschool work, or now that their day is not as occupied as it once was and they are spending their entire day at home, workers are not able to go into the home to assist those with services.
Louisa Scott Cooper, DD specialist, OPWDD

Why do you do it?

“I think most of us that work in this field, you do it for the intrinsic value of working with these people. There is a certain amount of joy that you get. In a lot of ways, it’s like working with young children. I think about what I’m going to do with people every day. We play games, gross motor activities or fine motor. Sometimes they just laugh at me because they think I’m kooky.”
Donna Karcz, habitation specialist, OPWDD

“We take a lot of pride in what we do. The people I work with and people in my agency, we take pride in serving. The legislature and the agency need to step forward and say these people are a priority and it is not OK to play chess with their lives.”
Gregory Salameda, psychologist, OPWDD

“My entire family has always been in some type of service. I did want to teach, however, I realized that people with developmental disabilities were having a harder time in schools, and it went beyond just teaching in the classroom. There was a reason why little Johnny came to school always upset, it wasn’t because he was in school, it was because there was something wrong at home, or something happened on the way to school. Maybe he was being bullied because of his disability, maybe on the school bus, somebody was making fun of him.”
Louisa Scott Cooper, DD specialist, OPWDD

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