Olivia Manes, seated between her parents, Tina and David Manes, and pictured with older sister Suzanne, age 20, and brother Jesse, age 14, at Christmas time.
From the Lincoln Journal Star:
Parents sue state to get answers in daughter’s death
By DEENA WINTER
Lincoln Journal Star
Friday, Feb 13, 2009At first, she was known only as Client 1.
An 18-year-old Beatrice State Developmental Center client had died.
Three hours after going into a seizure, she was dead.
She hadn’t had a seizure since 1999, when she began taking Klonopin to control them.
Her parents didn’t know it, but three days earlier, Beatrice staff had stopped giving her the medication, triggering what their attorney calls “a cascading series of medical errors.”
At about 3 a.m. on Jan. 16, her parents were awakened by the Pawnee County sheriff.
Client 1, as she was referred to in a state investigation, was dead.
But she had a name: Olivia Manes.
On Thursday, Tina and David Manes filed a $1.75 million claim against the state for wrongful death and the “pre-death terror, pain and suffering” of their daughter Olivia. They alleged at least 10 errors in her care.
A spokeswoman for the state declined to comment on the filing.
Tina and David learned Olivia had Dandy-Walker Syndrome when she was 2 months old. She was blind and mentally retarded. She never walked. She had 15 to 20 seizures per day.
They kept her home until she was 6 and it became clear they could no longer care for her. She had difficulty swallowing. Feeding her took a couple of hours. She wasn’t getting enough fluids.
Immediately, they knew where they wanted her to live.
David’s older brother, Mark, had Down Syndrome and lived at the Beatrice center.
“I grew up out there,” said David, a Beatrice native.
Tina said she felt guilty because she had “selfishly” kept Olivia at home longer than perhaps she should have. When she went to Beatrice, she was so small and possibly malnourished they could carry her like a toddler.
In Beatrice, she learned to eat, drink and swallow properly. She came to love eating.
She thrived, particularly after she began taking one tablet of seizure medicine daily. It was her lifeline.
She loved music especially Shania Twain and Christmas songs. She loved feeling the breeze on her face when someone pushed her wheelchair outside.
The Maneses and their son and another daughter live 39 miles away from Beatrice, in Steinauer. They visited Olivia at least weekly.
When she heard their voices, her mother said, she would light up and reach her hands out for a bear hug that could give you whiplash.
She loved to nestle her cheek next to yours, Tina said, crying at the memory.
They felt like she was meant to spread joy at Beatrice.
When they got the call telling them she’d died, they couldn’t understand how their girl, who hadn’t had a seizure since 1999, could be gone.
Two weeks after burying their daughter, the Maneses learned some of the heartbreaking details of Olivia’s death while watching the evening news.
“Nobody bothered to let us know,” Tina said of a report released to the media.
Nobody had told them staffers had stopped giving Olivia her seizure medicine. And although normally they’d get a call even when she had the sniffles or scraped her hand, nobody called when she began having seizures at 11:30 p.m. Jan. 15.
They weren’t told an ambulance picked her up two hours after the episode began. Once in the hospital, she was found to have pneumonia and a fever of 106 degrees.
Nobody had told the Maneses that no one checked Olivia’s vital signs while she was thrashing and seizing at the developmental center.
Tina breaks down when she thinks of her daughter suffering for hours “fighting for her life.”
Nobody called them to be with her daughter.
Nobody told them any of those things.
“We have never once gotten a call from BSDC,” Tina said. “Olivia was happy and healthy and besides having her syndrome, hasn’t had a seizure for 10 years.”
Last weekend, they got a phone call from Gov. David Heineman. He apologized that they had to learn the details of their daughter’s death on the news.
David said he talked to Heineman for about 90 minutes, explaining how he doesn’t blame the staff. He blames administrators for not properly training staff or being qualified to run the center.
He doesn’t think Heineman realized how severely disabled some of the people in Beatrice are.
“It seemed to me that he was out of touch,” David said.
He told the governor he thinks Beatrice should stay open and that group homes cannot provide the kind of services people like Olivia need.
The Maneses didn’t know until after Olivia died that the center had cut nursing staff on the night shift. They didn’t know, until they read a state investigation into her death, that not all staff was trained to handle seizures, even though 17 of the 18 people in Olivia’s unit had a history of them.
Despite all the negative publicity surrounding the Beatrice center “especially in recent years” the Maneses say they never saw the kind of abuse and neglect alleged by advocacy groups and inspectors.
The center is on the verge of losing $29 million annually in federal Medicaid funds due to abuse and neglect and failure to meet federal standards.
The Maneses used to pop in unannounced to make sure Olivia was being properly cared for and never saw problems.
“They were like family to us,” Tina said. “They’ve lost their little girl just like we have.”
And although they were often asked if they’d like to transfer Olivia to a group home or other community program, they always declined. They didn’t feel she would get the therapy and services she needed.
They believe the state made another mistake by removing 45 “medically fragile” Beatrice residents in the wake of Olivia’s death. Now those residents aren’t getting the kind of non-medical services they need, the Maneses say.
David’s brother still lives at the Beatrice center where he’s lived for 42 years. And that’s exactly where they want him to stay.
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