03-27-2005, 12:24 PM
Down Syndrome Patient Abused at State-Funded Home
By DEBORAH HASTINGS, AP
PHILLIPSBURG, N.J. (March 26) - 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!"
This is what remains of Perfelia Russo after briefly living at the Belvidere Group Home for the developmentally disabled in western New Jersey. She arrived in late April 2003. She was carried out Aug. 1, battered and terrified, her eyes bruised the color of eggplant, crying again that someone there hurt her.
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.
Before Belvidere, she was a joyous person who loved trips to Atlantic City with her Aunt Lena. She talked to everyone.
She had lived with her aunt since she was 15. Perfelia's mother died and her father was unable to cope with her needs.
"She was one of us," says her cousin, Salvitore Luizza, who grew up with Perfelia.
But Lena Luizza, Sal's mother and Perfelia's legal guardian, grew old. At 85, she lived with lung disease, which finally forced her to admit she could no longer take care of Perfelia.
So Perfelia was reluctantly placed in the group home. 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.
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. The state 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.
At Belvidere, Perfelia began falling down, said the group home staff.
Perfelia had walked just fine before she got here, her family said. And she'd never bruised or scraped her face. Family members didn't know what to think.
In all, she "fell" five times. Three times, she was taken to the emergency room of 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," cousin Renee Rossi-Rosen said.
Rossi-Rosen is an attorney. She has filled four accordion files with correspondence to state health officials demanding to know what happened. She could file a civil suit and ask for a lot of money.
Instead, she says, "I want justice. Nobody is going to pay me off. That's blood money."
Perfelia's cousin sent her first letter to James W. Smith, then-director of the Division of Developmental Disabilities, on Aug. 6, 2003. She demanded an investigation of Belvidere.
In a letter dated Sept. 9, Smith promised "a thorough investigation will be conducted."
But in the coming months, Rossi-Rosen became a foot soldier in a war of words with New Jersey health officials.
She received seven documents called Confidential Initial Incident Reports. They were dated from May 16, 2003, to Aug. 8, 2003.
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.
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 on July 28-29.
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."
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.
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.
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.
When he kissed Perfelia on her cheek on one visit, her 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 the hard decision that she could no longer live at home alone.
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."
By DEBORAH HASTINGS, AP
PHILLIPSBURG, N.J. (March 26) - 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!"
This is what remains of Perfelia Russo after briefly living at the Belvidere Group Home for the developmentally disabled in western New Jersey. She arrived in late April 2003. She was carried out Aug. 1, battered and terrified, her eyes bruised the color of eggplant, crying again that someone there hurt her.
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.
Before Belvidere, she was a joyous person who loved trips to Atlantic City with her Aunt Lena. She talked to everyone.
She had lived with her aunt since she was 15. Perfelia's mother died and her father was unable to cope with her needs.
"She was one of us," says her cousin, Salvitore Luizza, who grew up with Perfelia.
But Lena Luizza, Sal's mother and Perfelia's legal guardian, grew old. At 85, she lived with lung disease, which finally forced her to admit she could no longer take care of Perfelia.
So Perfelia was reluctantly placed in the group home. 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.
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. The state 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.
At Belvidere, Perfelia began falling down, said the group home staff.
Perfelia had walked just fine before she got here, her family said. And she'd never bruised or scraped her face. Family members didn't know what to think.
In all, she "fell" five times. Three times, she was taken to the emergency room of 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," cousin Renee Rossi-Rosen said.
Rossi-Rosen is an attorney. She has filled four accordion files with correspondence to state health officials demanding to know what happened. She could file a civil suit and ask for a lot of money.
Instead, she says, "I want justice. Nobody is going to pay me off. That's blood money."
Perfelia's cousin sent her first letter to James W. Smith, then-director of the Division of Developmental Disabilities, on Aug. 6, 2003. She demanded an investigation of Belvidere.
In a letter dated Sept. 9, Smith promised "a thorough investigation will be conducted."
But in the coming months, Rossi-Rosen became a foot soldier in a war of words with New Jersey health officials.
She received seven documents called Confidential Initial Incident Reports. They were dated from May 16, 2003, to Aug. 8, 2003.
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.
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 on July 28-29.
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."
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.
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.
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.
When he kissed Perfelia on her cheek on one visit, her 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 the hard decision that she could no longer live at home alone.
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."