Cerebral Palsy Nassau fights for its fair share amid cuts

Back in the spring, employees at the Cerebral Palsy Nassau home in Bayville, donning garbage bags for gowns and used, week-old masks, were tending to the 37 out of 46 residents who had developed Covid-19. Five of those residents died.

“Back then it was nerve wracking and when I look back I’m still in awe of what people did because not knowing when, where, how you might contract the virus,” said Paul Lowry, the director of residential services at CP Nassau, said. “Staff had to push down that fear of the unknown to be here and many were here for a good stretch. They didn’t leave.”

Seasons passed, as did countless Zoom sessions as part of the agencies’ Adult Day Program, when, along with other care providers, the county wide agency serving individuals with cerebral palsy faced yet another challenge this year — cuts in funding from the state and the federal governments. The latest starts on Oct. 1, with a cut in payments from the state to residential homes when residents are away for reasons like hospital or family visits.

“For anyone that goes into the hospital, we stopped getting paid full payments, we only get half pay,” CP Nassau Executive Director Bob McGuire explained. “Some people on the state level don’t understand what we do. When someone goes to the hospital, it costs us more money, not less, because we staff the hospital.”

The staff are advocates for hospitalized residents, many of whom are unable to speak for themselves. They also help clean residents and roll them over in bed to prevent bedsores. McGuire said that since these cuts, he’s had to inform families that CP Nassau staff may no longer be able to accompany residents, leaving care up to families and hospital staff.

Rob Masterson of East Meadow, the father of a CP Nassau resident as well as a board member for the agency, knows just how important it is to have a staff member stay with these residents while in the hospital. “If my son went to the hospital, he can’t speak for himself, really,” Masterson explained. “You could get a few basic ideas that he’s in pain, but he really can’t say where his pain is. So they would need someone to be with him to understand what he’s talking about. It really impacts the quality of life and really safety in the end.”

Even when Masterson’s son Greg sleeps over his house on Saturday nights, CP Nassau could now receive a cut for the days he isn’t there. “I take him home on Saturday afternoon and he loves that,” Masterson said. “He seems to get much better sleep when he’s here for some reason. He goes home on Sunday afternoon, so really he only misses two or three meals that they’re not feeding him.”

“The people up in Albany seem to think that these cuts really won’t hurt us, that we have less expenses when someone isn’t in the house,” Masterson continued. “The only savings of someone not being in the house is the food you would have fed them. You still have the same staff.”

The October cut comes after a handful of other cuts and non-reimbursed expenses directed at CP Nassau and agencies like it, such as the July 21 halt on what’s called “retainer payments,” that are meant to maintain day service sites until staff and individuals utilizing the service can safely return. Another was the Aug. 17 state imposed 20 percent withholding on all state paid services, with exception of Independent Support Services, housing subsidies and environmental modifications like ramps and wheel chair ramps.

Cuts in funding have forced CP Nassau to lay off staff members after working during the pandemic’s peak as well.

Several non-for-profit agencies were also left on their own to find and provide personal protective equipment and to provide hazard pay for staff who were risking their health to provide care for patients. It was the community that was instrumental in providing CP Nassau with PPE, Lowry said.

“It’s like they’re pulling the rug right under from so many people with disabilities,” Lowry said. “It’s not right. It’s not where you go to try to save a dollar.”

For Masterson, the services that CP Nassau provides are vital. “I was in a situation where my son couldn’t really live with me. I am going to be 70 in April and I just don’t have the ability to lift him, he’s over 100 pounds and to do it every day wouldn’t be possible,” he said. “They’re doing this to us, [cutting funding], because they can, not because it’s the right thing to do.”

It’s not the first time that McGuire has seen a lack of support for the industry from the state and federal governments.

“For the most part, there’s been no increase in our rates for the adult programs and residential programs for 10 years,” he said. “So, while insurance goes up and heat goes up and everything else goes up, we’ve had no compensation to adhere to that.”

To help CP Nassau and agencies like it, McGuire said, people should contact Gov. Andrew Cuomo’s office and say that “the decisions that are being made underneath him are creating a very negative impact on the quality of lives of individuals with disabilities and their families and their staff.”

Petitions and information about the funding cuts, as well as CP Nassau’s work, is available on the agencies website at www.cpnassau.org.