By KATHERINE MOSTACCIO
A sign emblazoned with the words “Home Strong” hung from Tony Otto’s motorized wheelchair, joining ones held by around 50 PEF members, leaders, community members, family and friends as they rallied May 8 in Rome in support of the 51-year-old quadriplegic man facing expulsion from his home.
Otto’s mother and stepfather, Barbara and John Destito, have been told they must choose a nursing home for Otto, as the state Office for People with Developmental Disabilities (OPWDD) “can no longer support their son’s nursing needs” at the certified residence facility where he currently lives.
“They say they can’t get nurses to cover him, but they do,” said Barbara Destito. “I really think minimum wage has gone up so much that the general public is paying more than the state now. It’s hard to get nurses.”
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.
But the Destitos said nothing in Otto’s medical status changed to warrant a move and they want their son to remain in the facility he has called home for the last 25 years. Operated by the Central New York Developmental Disabilities Services Office, the facility that Otto shares with seven others offers him individual attention and care close to family and affords him opportunities to go to concerts, go shopping, and attend family events — immersing him in the community in ways a nursing home could not.
PEF Executive Board member Jodi Nettleton, a developmental disabilities policy developer at OPWDD, who took care of Otto for five years when she began her career as a social worker, said this setting is what Otto needs.
“A nursing home provides medical care and does nothing for his individuality,” Nettleton said. “It does nothing for him as a person. Part of our mission at OPWDD is to be person centered. We do everything around the person. So they can live in a place they choose with the support they need. Tony needs this level of support. Not a nursing home where he’ll just go to be a patient.
“We don’t put our people in nursing homes,” she said. “That was the spirit [of the rally]. We support them like we’ve always done.”
His mother agrees. “Nursing homes near here won’t have transportation,” she said, which will rob Otto of the ability to leave the facility, which he currently enjoys. In addition, there are not many homes in the area that take ventilator-dependent individuals. And of those that do, the closest have waiting lists.
The blend of rally attendees was heartening. Nettleton said community members were joining in as they drove or walked by, wanting to sign the petition or trying to donate money to Otto’s cause. “As cars stopped by we were handing them information and they were asking what it was about,” she said. “There was a real positive community presence.”
PEF Vice President Randi DiAntonio said the petition PEF was circulating in support of Otto’s cause gained 40 signatures just from passersby stopping to sign and 100 petitions were handed out to cars that stopped. “We just made sure that OPWDD knew that we felt their decision to move Tony was a disservice and they should keep him in his home,” DiAntonio said. “Their nursing shortage is not a rationale to change the quality of his life.”
Also among the rally attendees were state Sen. Joseph A. Griffo, who represents Rome and the surrounding counties; Oneida County Legislator Emil R. Paparella; several PEF Executive Board members; retirees from Otto’s facility, including two who worked with him in 1992; and current employees.
PEF has strongly advocated for Otto’s right to remain in his home since the situation was brought to the union’s attention by his family. Both his parents are retired PEF members who worked at Central New York Psychiatric Center, among other state agencies.
“We’re doing everything we can to raise awareness and help the community understand what’s really happening,” DiAntonio said. “OPWDD can say it’s only happening rarely, but that’s not true. That’s not what we’re hearing from our members. People are being forced out, not by medical changes, but by staffing changes and we’re opposed to that.”
The Destito family received a letter from OPWDD Region 2 Director Jeanne Wilson advising them of their right to request an informal resolution. The two sides spoke by conference call but couldn’t come to an agreement. When that avenue failed, the family and OPWDD set a hearing for May 9.
The state presented its case May 9 and the family May 10. The outcome of the hearing won’t be known for a while, DiAntonio said, but the state can’t move Otto until the process, including any appeals, is over. In the meantime, the facility where Otto lives and wants to remain is not fully staffed and OPWDD has not posted to fill the open positions, DiAntonio said.
“They have midnight openings, the 11 p.m. to 7 a.m. shift, and they advertise a job 8 a.m. to 4:30 p.m.,” Destito said. “I don’t think they are trying at all to fill the nursing positions. I think they are trying to close. I think they should take care of the people they have accepted and continue to care for them.”
The Destitos are thankful for the work the union has done on behalf of their son and others like him. “There was a good turnout at the rally,” Mrs. Destito said. “A nice article in the Rome paper with a nice picture. The union did a lot of work for it. They did a lot of handouts, posters and buttons. I’m very appreciative of that. Randi did a great job on the radio.”
If the outcome of the hearing isn’t in their favor, the family can keep fighting.
“Tony was very down at first,” Destito said. “But I’ve explained to him if we don’t win, there’s an appeal and then there’s another appeal.”
“They’re taking someone from a meaningful life and putting him in a nursing home,” DiAntonio said. “There is a big difference in care. That is what we really wanted to emphasize. That is not OK. In his group home, he has a van accessible for his wheelchair. He has staff that take him to his family. In a nursing home, when you’re one of 400 patients, that’s not going to be an option.”
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