There are times now when Perfelia Russo is able to make a cameo appearance in her own life.
She smiles that lopsided grin and laughs the way she used to, a mischievous “heh, heh, heh,” that rumbles deep in her throat and lights up her childlike face with momentary lucidness.
But then her eyes close tight, her face goes slack, and the drugs reclaim her, carrying her away just as surely as a boat steaming from the dock.
Though she no longer wakes up screaming, “Don’t hit me! Don’t hit me!”
It has been 18 months since she left. Her family has been fighting the state of New Jersey ever since. Though state investigators determined there were three incidents of neglect and abuse involving Perfelia, Belvidere remains open. No criminal charges have been filed.
Perfelia Russo is 60, but she will forever be 4 years old, locked in an aging woman’s body, the key turned by Down syndrome, unable to perform the simplest tasks including tying her shoes.
'She was one of us'
Before Belvidere, she was a joyous person who loved trips to Atlantic City with her Aunt Lena. She could sit for hours, pumping coins into slot machines and shouting, “Be there!” as the wheels spun. No matter where she went, she talked to everyone.
She had lived with her aunt since she was 15. She was the only daughter of Lena’s sister, who died of breast cancer. Perfelia’s father was unable to cope with the needs of his Down syndrome child.
“She was one of us,” says her cousin, Salvitore Luizza, who grew up with Perfelia in the same house.
But Lena Luizza, Sal’s mother and Perfelia’s legal guardian, grew old. At 85, she lived with an ever-present oxygen tube and debilitating lung disease, which she said wore her out more than old age. It also forced her to admit she could no longer take care of Perfelia, who is unable to take care of herself. No other relatives could provide the watchfulness she needs.
So Perfelia was reluctantly placed in a group home where she could receive round-the-clock care and attend nearby special education classes during the day.
It is not easy to send a loved one to an institution. It is best not think of them as human warehouses for the dying and the slow. Families believe, because they have to, that they are doing the right thing.
Troubled social welfare system
The state Department of Human Services, despite repeated requests from The Associated Press, refused comment on Perfelia and what, if any, measures had been taken against the home.
The Association for Retarded Citizens of Warren County, a private agency which contracts with the state-licensed Belvidere and oversees its patients, also refused comment, as did the home’s new manager, hired after Perfelia left, and the state investigator assigned to Perfelia’s case.
New Jersey’s troubled social welfare system has been criticized for years, with reports of abuse and neglect. Some of the worst have occurred in institutions for children and the developmentally disabled. New Jersey passed “Danielle’s Law” in 2003, requiring health care workers to call 911 for life-threatening emergencies. It was named after Danielle Gruskowski, 32, a group home resident who died from complications caused by a high fever that went untreated. She also had severe burns on her face, allegedly caused by an employee who threw hot tea on her.
'She missed us to death'
After Perfelia entered Belvidere, Aunt Lena, alone in her own house, fell into a deep depression.
Perfelia began falling down, said the group home staff. Her face was bashed, the skin scraped off her nose, and she degenerated into bouts of weeping.
She also hated the place. When her family came to visit, she cried and begged to be taken home. “It was very hard,” says her cousin, Monica Hubert, a nurse’s aide and one of Sal’s two grown daughters. “It was hard for her and it was hard for us. She missed us to death.”
They didn’t understand the explanations offered by Belvidere employees. Perfelia had walked just fine before she got here, her family said. And she’d never bruised or scraped her face.
Monica, Sal, his other daughter Michelle Luizza, and another cousin, Renee Rossi-Rosen, didn’t know what to think.
In all, she “fell” five times. Always, it was her face and nothing else that was injured, her family said. Three times, she was taken to the emergency room of nearby Warren Hospital. Her last visit there was prompted by caretakers at her day school, who said Perfelia should be seen by a doctor. Her eyes were so black-and-blue, the school took Polaroids of her.
“She looked like she had been in a fight with Mike Tyson,” Rossi-Rosen said.
Rossi-Rosen is an attorney. She is also tough and stubborn. She has filled four accordion files with correspondence to state health officials demanding to know what happened to her cousin.
She could file a civil suit and ask for a lot of money, but she and her cousins will have none of that.
“I want justice,” she says. “Nobody is going to pay me off. That’s blood money.”
Full extent of abuse revealed
Perfelia’s cousin sent her first letter to James W. Smith, then-director of the Division of Developmental Disabilities, on Aug. 6, 2003. It ran three pages and it was not subtle. She demanded an investigation of Belvidere. “This must not be ignored nor will I allow it to be ignored,” she wrote. She highlighted the sentence in bold type.
It took more than a month for Smith to answer. In a letter dated Sept. 9, he promised “a thorough investigation will be conducted.”
But in the coming months, Rossi-Rosen became a foot soldier in a war of words with functionaries in New Jersey’s health system. And she learned that Perfelia had been more abused than the family suspected.
Sometimes the state sent documents detailing events the family knew nothing about.
Rossi-Rosen received seven documents called Confidential Initial Incident Reports. They were dated from May 16, 2003, to Aug. 8, 2003, one week after she entered the emergency room for the last time:
May 16. “Perfelia Russo told (a staff member) that she fell and bumped her head.” Even though she had a lump on her skull, staff sent her to school, where it grew to 3 inches. She was taken to Warren Hospital’s emergency room, where a physician’s assistant sent her home, cautioning staff to watch for signs of concussion.
June 20. Perfelia told employees at her day school that she had been slapped across the face and choked. A staff member at Belvidere was suspected, and “removed from the schedule pending an investigation,” the report said. The name of the employee was blacked out. Perfelia’s family does not know the outcome of that investigation.
July 23. Perfelia yelled at a home employee: “Don’t hit me, don’t hit me. You better not hit me.” Under a box titled “additional comments,” officials wrote, “Perfelia suffers from Alzheimer’s and has been making frequent accusations against staff.”
Perfelia does not have Alzheimer’s, her cousin says. “She has Down syndrome,” Rossi-Rosen said. “That’s it. They couldn’t even get that right.”
July 26. Perfelia was discovered “with golf-ball size bump on her head.” Again, group home staffers sent her to school. Two days later, the report says, a nurse at the school told Belvidere staffers that Perfelia should be seen by a doctor because of her blackened eyes.
The report does not say how Perfelia was injured or why no one at Belvidere appeared to notice her battered face. The school took six Polaroids of Perfelia, noting the date and time. Four were taken on July 28. Two were taken the next morning.
They show a confused-looking woman with massive bruising, as if someone had punched her in each eye. There was a wide gash on her forehead. The school later gave the photographs to Perfelia’s family.
July 29. Four hours after the school took Polaroids of her face, another incident report was filed. Underneath a box marked “Injury Level,” the report said “none.” Perfelia told two health workers at Belvidere that someone hit her. Then she demonstrated how it was done.
She “took her fist and hit herself in the eye and stated 'like this.' When we asked her where this happened, she stated, 'Downstairs. He say don’t look, don’t look,'" the report says. Perfelia could not identify her attacker beyond calling him “the boy.”
Months later, in correspondence sent by the state during its investigation, health officials confused Perfelia with another injured patient.
John Pernal, the state’s Human Services administrator for Warren County, wrote Rossi-Rosen about an October 2003 phone message he’d left saying Perfelia suffered five broken ribs at Belvidere in an incident that had never been reported.
“My mistake was that I had confused Perfelia with another (patient) in my haste and I apologize for any anxiety this may have created,” Pernal’s letter said.
“How do you like that?” Rossi-Rosen asks. “How can you overlook five broken ribs? I feel sorry for whoever that other person is, and their family.”
After more than a year, the state concluded its investigation. Russell Carlini, chief of the Special Response Unit, wrote that investigators documented two cases of neglect and one of abuse during Perfelia’s 2003 stay:
May 16: The first time Perfelia fell, a staff member said her bedroom was checked only twice during the night. She should have been checked every 30 minutes.
July 26: Staff should have immediately sought treatment for Perfelia’s facial bruising and the lump on her head.
July 9: An unnamed staff member physically abused Perfelia by dragging her down the stairs during a fire drill. Other employees had witnessed it, but their reports were not forwarded to health officials.
Perfelia’s family knew nothing about the fire drill incident, they said.
But Carlini’s investigation summary contradicted itself.
Despite noting that Perfelia should have received immediate medical attention for the bump and bruising on her face, Carlini wrote that she had “no sign of injury to her face and no evidence to corroborate the allegation,” that someone had punched her.
Investigators recommended disciplinary action, employee training and enforcement of staffing requirements.
And that, apparently, is the end of it, according to Perfelia’s family. Rossi-Rosen continues her letter campaign, but says she has heard nothing since November.
A law enforcement investigation was inconclusive.
'Who's my honey bunch?'
Late last year, Perfelia moved into Aunt Lena’s room at a nursing home just 10 minutes from where Sal Luizza sells cars at a Honda dealership.
He stopped at least once a day to check on his mother and his cousin. “Per-Per,” he called to Perfelia, using her nickname. “Per-Per, open your eyes. You’ve been sleeping all day.”
Sal leaned over her chair and pried open her eyes with his thumb and forefinger. “Come on,” he said. “Who’s my honey bunch?” He planted big kisses on her cheek.
Perfelia’s brown eyes rolled, then focused. “Sal boy,” she said, which is what she calls her cousin. Her voice is slurred, wrapped in cotton from drugs she is given to keep her calm.
Across from Perfelia’s hospital bed, separated by a curtain, was her aunt’s side of the small room.
Lena’s bad health forced her family to make yet another hard decision. They had a meeting and told Lena that it was too dangerous for her to live alone anymore. They had already tried in-home care.
“You know what she’d do?” Sal said, grinning and pointing to his mother. “She’d tell the girl, ‘Here, honey, go get me some Chinese.’ Or she’d give her money and send her out to buy lottery tickets.”
Lena rolled her eyes and shrugged her shoulders as if to say, “So, what’s your point?”
Eventually, the family got Perfelia placed here, too. But in late January, Lena’s heart began to act up. In the wee hours of a Sunday morning, her heart and her lungs gave up and she died of congestive heart failure. Now her side of the room is empty.
Perfelia is alone again. She has lived longer than most people with Down syndrome, a genetic disorder manifested by mental retardation.
At her Aunt Lena’s wake, she understood that something was very wrong.
“What’s going on?” she kept asking. When her cousin Michelle Luizza pushed her wheelchair to the front of the room and tried to get Perfelia to say goodbye to the body in the casket, Perfelia balked. “No,” she said, turning her head and refusing to look.
“She was with it all day,” said Rossi-Rosen. “She knew what was going on. And she knows that Lena isn’t in the room anymore.”
Rossi-Rosen’s voice breaks. “I can’t even think about it,” she says. “I don’t let myself think about it.”
Will Perfelia remain at the nursing home?
Her cousin sighs. “Yes,” Rossi-Rosen replies. “She’ll stay there.”