Shedding light on the nurse shortage with one man’s story
PEF shoulders the needs of developmentally disabled people
By DEBORAH A. MILES
This is about broken promises and how one family is trying to cope with a decision about their 51-year-old quadriplegic son, Tony. The bigger picture within this one family scenario revolves around the short staffing of registered nurses at state facilities. According to PEF leaders, it is a problem that has escalated and is crucifying services that people need, want and deserve.
Like most parents, John and Barbara Destito want the best for their son. They said Tony was the first child to be mainstreamed in their community’s elementary school, graduated from high school and earned a two-year community college business degree.
“Initially, New York state wanted to place Tony in a comfort care facility. It was not concerned about him finishing his education. We were forced to place him in a Massachusetts facility where the staff helped him earn his degrees,” John Destito said.
Both of Tony’s parents are retired PEF members who worked at Central New York Psychiatric Center, among other state agencies. Around 1994 when Tony was ready to leave the Massachusetts home, former PEF Region 6 Coordinator Mike DelPiano assisted the family. They were able to transfer Tony to a house operated by the Central New York Developmental Disabilities Services Office.
Throughout the years, Tony’s physical condition weakened and he was no longer able to spell out words with his fingers, and was placed on a ventilator to help him breathe. The staff at his residential home never gave up on Tony. Because of their attention to individuals, he was still able to go to concerts, shopping, attend weddings and funerals. He became a part of the community, and has a sister and brother living very close to the place he calls home.
“The location is perfect,” Barbara Destito said. “Now the state is saying they can’t get nurses to take care of him and want to move him into a nursing home. Many nursing homes do not have ventilator equipment. Many of the homes are located in distant counties, and the closest one has a waiting list for patients who need a vent bed.”
“If he goes into a nursing home, he will only be provided with comfort care. He won’t be part of the community. That is contrary to the whole mission and vision statement of the state Office for People with Developmental Disabilities (OPWDD),” his father added.
PEF Executive Board member Jodi Nettleton is a developmental disabilities policy developer at OPWDD, and was a social worker when she launched her state career and took care of Tony for five years.
“I have kept in touch with him over the years and am very concerned. Tony has been able to live life the way he wants to live in his current situation with the support he receives from OPWDD.
“In a nursing home, he will only receive medical care, and that will do nothing for his spirit or individuality. He is currently receiving all the nursing and staffing support with individualized attention, and being able to be a part of the community,” Nettleton said.
“His parents were told the state can no longer serve Tony or meet his nursing needs. That is because the state has trouble recruiting and retaining registered nurses. As a result, state-operated services throughout New York have diminished. People like Tony are being transferred to nursing homes even though the state promised families they would take care of their loved ones. The state has not allocated adequate funding to support nursing titles to compete with the private sector, so it is reducing the footprint of services which is an injustice.
“As a PEF leader, I feel we need to advocate for these individuals so the state can provide the funding and support to continuing serving the people we have taken care of for many years. This is not just happening at OPWDD. This situation with Tony should shed light on other state agencies as well.
“OPWDD’s vision statement focuses on providing a productive and fulfilling life for people with developmental disabilities by creating opportunities and helping people with the supports and services they want and need. We, as labor leaders, would like OPWDD to support the necessary staff to carry out its vision.”
“What Tony and his family are going through now is not an isolated situation. Inappropriate placement has been and continues to be a disservice to individuals throughout the state, especially those without an advocate.
“For years, PEF leaders and members have voiced their concerns to elected officials about the state cutting services and how that results in diminished care, and ultimately placing individuals in unsuitable situations to meet their needs,” said PEF Vice President Randi DiAntonio.
The Destito family said they received a letter from Jeanne Wilson, the Region 2 director at OPWDD which stated they have the right to request an informal resolution, in which they participated through a conference call.
The next step is a hearing where both parties can appeal, which is expected to take place in May.
“After that, if you don’t get the resolution you want, you can go to civil court,” John Destito said.
Tony’s situation has prompted PEF to create and post an online petition to gain support for his situation, but also to emphasize the need to further safeguard the rights of developmentally disabled individuals.
His family is appreciative of PEF’s intervention and support. They also see this as a statewide problem, as John Destito said, “It used to be a great job working for the state, but the state hasn’t kept up with the services and needs of its residents. They have registered nurses doing laundry and other out-of-title things. That and pay inequity is why the short staffing and turnover rate is so high.
“That is why the promise the state made to take care of our son is broken.”
PEF Members: The rights of developmentally disabled individuals in New York state are being ignored by the Office for People with Developmental Disabilities (OPWDD). OPWDD has been closing 24-hour nursing support residences, intensive Intermediate Care Facilities and diminishing the services necessary for people to live in the least restrictive setting by outsourcing these individuals to nursing homes and other long-term care facilities.
We are circulating a petition to help a PEF family who has been told by OPWDD that they must choose a nursing home for their son, Tony Otto, as OPWDD “can no longer support their son’s nursing needs”. Tony Otto and his family need your help now!
Click here to sign the petition: http://bit.ly/opwddpefpetition