Saturday, May 16, 2009

Texas time warp? State criticized for mental care

DENTON, Texas - For more than a century, thousands of mentally disabled Americans were isolated from society, sometimes for life, by being confined to huge state institutions.

In at least one place, they still are.

Texas has more mentally disabled patients in institutions than any other state, and the federal government has concluded that the state’s care system is stubbornly out of step with modern mental health practices.

Critics allege that Texas remains stuck in an era when the mentally disabled were hidden away in large, impersonal facilities far from relatives and communities.

“In Texas, it’s like a time warp,” said Jeff Garrison-Tate, an advocate who wants to close the 13 facilities called “state schools” and move patients into group homes.

For the third time in three years, the criticism has attracted the attention of the Justice Department, which on Tuesday accused Texas of violating residents’ constitutional rights to proper care.

Investigators found that dozens of patients died in the last year from preventable conditions, and officials declared that the number of injuries was “disturbingly high.”

In addition, hundreds of documents reviewed by The Associated Press show that some patients have been neglected, beaten, sexually abused or even killed by caretakers. Inspection reports also describe filthy rooms and unsanitary kitchens.

Many of the nation’s mentally ill or disabled in the 1800s were housed together in institutions, sometimes called insane asylums. But by the 1960s, most experts concluded that mentally disabled patients fared better in smaller, community-based settings.

The American Institution on Intellectual and Developmental Disabilities says large care facilities - usually those with at least 16 residents - “enforce an unnatural, isolated, and regimented lifestyle that is not appropriate or necessary.”

Because of those concerns, eight states have abolished large institutions for the mentally disabled. Another 13 states closed most of their largest facilities, leaving just one open in each state.

But Texas has remained “the institution capital of America,” said Charlie Lakin, director of the Research and Training Center on Community Living at the University of Minnesota.

The 13 facilities in Texas house nearly 5,000 residents - more than six times the national average.

On a per-capita basis, Texas has 20.4 people per 100,000 in large institutions, Lakin said. The national average is 12.2 people.

Other states with large populations such as New York and California - which have rates of 11.2 and 7.5 people, respectively - rely far less on large institutions.

Federal law requires the mentally disabled to be treated in “the most integrated setting” possible - a factor that led to the Justice Department rebuke of Texas.

Laura Albrecht, a spokeswoman for the Texas Department of Aging and Disability Services, said the agency is expanding community-based services. Texas officials say keeping the facilities open is a matter of preserving as many treatment options as possible.

But critics allege that “warehousing” patients in large institutions invites abuse. Patients are isolated from their families and communities, making regular contact with loved ones more difficult. And caretakers often get overwhelmed by the large numbers of patients, Garrison-Tate said.

In Texas, officials verified 465 incidents of abuse or neglect against mentally disabled people in state care in fiscal year 2007. Over a three-month period this summer, the state opened at least 500 new cases with similar allegations, according to federal investigators.

An AP investigation earlier this year revealed that more than 800 state employees have been fired or suspended since the summer of 2003 because they abused, neglected or exploited mentally disabled residents.

And in the one-year period ending in September, as many as 53 deaths in the facilities were due to potentially avoidable conditions such as pneumonia, bowel obstructions or sepsis, the Justice Department said.

Some families tell horror stories of their loved ones in the state facilities. For instance, Michelle Dooley said her son spent three months in the Austin State School, which she described as a place of “dingy yellow floors and patients running around without any clothes on.”

During his time there, he refused to leave his bed and often languished in his own excrement, she said.

Dooley eventually moved her son into a group home in Denton where treatment costs average about $50,000 per year - roughly half as much as the costs at state schools, Garrison-Tate said. Medicaid often picks up most of those costs.

“It was just horrible,” Dooley said. “If he goes back to a state facility, he will shut down and die.”

At the San Angelo State School, inspection reports from 2007 took note of scuffed walls pocked with holes, rotting food, dirty kitchens, broken furniture and missing shower curtains.

More seriously, two employees were fired after throwing a resident into a pool while he was wearing a restraint jacket. The employees had made a bet with the resident that he would be unable to dunk another resident under water. When he lost the bet, the employees restrained him and threw him in the water, according to the reports.

Other families say they are happy with the state care.

Neil Davidson said his daughter Susan, who has cerebral palsy and is mentally retarded, has flourished during her 10 years at the Lubbock State School.

“I’m very impressed with the level of care she has received,” Davidson said. “As far as I am concerned, it’s Mr. Rogers’ neighborhood. Everybody is looking out for everybody else.”

A visit to the Denton State School, the largest in Texas, reveals a sprawling campus spread across well-kept lawns. Superintendent Randy Spence described the place as a “happy, homelike atmosphere.”

“The vast majority of our employees love the people they work with,” said Cecilia Fedorov, another spokeswoman for the Department of Aging and Disability Services. “They think of them as extended family.”

But Denton is also the site of Texas’ most notorious case of state school abuse.

In 2002, a care worker repeatedly kicked and punched a resident in the stomach and groin. Haseeb Chishty nearly died after that beating. He is now confined to a wheelchair and unable to feed himself or use the bathroom.

“It got to the point where it was fun beating him, torturing him,” said former care worker Kevin Miller, who is now serving 15 years for aggravated assault.

In a statement videotaped by Chishty’s lawyer, Miller said he and many of his fellow care workers used methamphetamines, cocaine and Oxycontin on the job.

Chishty’s mother filed a lawsuit against the facility, but it went nowhere. In Texas, government entities are all but immune from lawsuits.

Some critics want to close the state schools. But because the Texas Legislature created each one, only lawmakers can close them.

Many of the institutions are large employers in small towns, and they often pay more than other jobs in rural areas. Lawmakers fear taking action that would lead to layoffs, Garrison-Tate said.

“Even if we said we wanted to close all state schools, the community resources aren’t there at this time,” said state Rep. Larry Phillips, chairman of a legislative committee studying the facilities.

Kelly Reddell, the lawyer whose client’s son was beaten nearly to death, said the state is not doing right by its mentally disabled.

“The very nature of the institutional setting, I think, creates the environment for the abuse to take place,” she said. “How in the world can you think this system is the best and it makes sense?”

British conjoined twin dies after surgery

LONDON - Faith was breathing for Hope. So when the newborn conjoined Williams twins were separated, it turned out that Hope couldn’t live without her sister.

Week-old Hope Williams died Tuesday night at London’s Great Ormond Street Hospital after being separated from her sister, her doctor, Agostino Pierro, said Wednesday.

“Hope’s lungs were too small to support … breathing and the circulation,” said Pierro, who headed the surgical team that separated the twins. “The lungs of Faith were somehow supporting Hope.”

Faith was in stable condition Wednesday in the hospital’s intensive care unit. Her chances of survival are about 50 percent, Pierro said, and she will have to undergo further surgery to close the incision in her stomach.

The twins were born Nov. 26 by Caesarean section, joined from their chests to the lower part of their stomachs. They had separate hearts, but shared a liver and intestines.

Doctors had hoped to give the girls more time to become stronger before trying to separate them, but Pierro said the infants began to deteriorate Monday.

“This was an emergency operation, because there was a blockage in their joint intestine, which could only be resolved through surgery,” he said.

A team of more than 20 doctors, nurses and other health care professionals worked to separate Faith and Hope in an operation that began Tuesday morning and finished 11 hours later.

“The operation done on Hope and Faith was one of the most complex and challenging we have ever faced,” Pierro said.

Hope’s parents, 18-year-old Laura Williams and her husband, Aled, from Shropshire in west England, were with their daughter when she died.

“They are clearly devastated by the loss of their daughter,” Pierro said.

Twins joined at the abdomen are easier to separate than those joined elsewhere, such as the head. Last month, doctors in Cleveland, Ohio decided it would have been too risky to separate 4-year-old Italian twins born connected at the head. The girls, Anastasia and Tatiana Dogaru, will remain together, doctors said.

Dr. Charles Stolar, pediatric surgeon in chief at Morgan Stanley Children’s Hospital of New York-Presbyterian Hospital, said if all goes well, Faith’s recovery should take weeks rather than months.

“They’ve had to divide the liver, they’ve had to repair bile ducts, they’ve had to repair intestines,” said Stolar, who has performed similar operations. “So all that has to heal … I would be optimistic.”

ABCs plus playing nice equals better pre-K smarts

WASHINGTON - Should preschool be more about ABCs or learning to play with others? With the help of Twiggle the Turtle, scientists found out that youngsters do better if they do both.

So concludes a major study in Head Start programs in Pennsylvania, research with implications for preschools and parents everywhere.

Face it, 4-year-olds are lovable but self-centered, impulsive and prone to meltdowns. Teaching them not to whack a classmate who snatches a toy is a big part of preschool socialization.

But growing awareness that early learning is important to future school achievement has put more pressure on preschool’s academic side, especially efforts to eliminate achievement gaps between low-income and wealthier students.

Both skills are intertwined, said Penn State University psychology professor Karen Bierman, who led the new study.

“If preschools focus just on the facts - let’s just get the letter knowledge in, let’s just get the number knowledge in - they’re really missing the engine that’s going to drive the desire and motivation for learning,” she said.

To prove the relationship, Penn State researchers turned to Head Start, the federal preschool program for poor children.

With funding from the National Institutes of Health and other federal agencies, they divided 44 Head Start classrooms with about 350 4-year-olds. Half taught a traditional Head Start curriculum.

The other half added to their traditional teaching a program called REDI Head Start that included weekly special social lessons - puppets or stories that teach specific problem-solving skills.

Take Twiggle the Turtle. He pushed his friend after she knocked over his block tower, and thus couldn’t play anymore. A wise old turtle told Twiggle that when he got upset, he should go inside his shell, take a deep calming breath, and say what bothered him and how it makes him feel: “It really made me mad that you knocked my blocks over.”

Cross your arms to be like Twiggle in his shell, the teachers tell their preschoolers. Then practice what James might say if Suzie takes the toy he wants, or if Billy says something mean to Tommy.

Instead of the vague “use your words” advice that parents tend to spout, “be like Twiggle” became the theme and a good habit.

“What’s really beautiful: You’ll see children over in the blocks center and someone stands up and does the turtle and talks, and someone else does the turtle and talks, and then they sit down and play again,” Bierman said.

Another enrichment tested: More intense reading-readiness instruction. It included interactive reading - where the teacher asks questions after each page or so to work on vocabulary and comprehension - and listening games to tease out discrete sounds in words. Both require self-control to focus.

By year’s end, preschoolers given enriched instruction scored higher on tests of school readiness, both social and academic, Bierman reported Friday in the journal Child Development.

Some examples: Seventy percent of kids in the enriched classes showed little or no disruptive behavior, compared to 56 percent in the regular classes. Twelve percent of the enriched students still struggled to focus attention on academic tasks, compared to 21 percent in regular classes. And 20 percent in enriched classes exceeded a national vocabulary norm compared with 15 percent in regular classes.

Preschools always aim to teach good behavior, but a crowd-control approach - “stop doing that, put that down, don’t pull his hair” - doesn’t help children learn to resolve conflict, said James Griffin of the NIH’s National Institute of Child Health and Human Development.

The new study shows how to teach children positive steps, not just what to avoid, in a way that’s easy for busy teachers, he said. Much of the enriched curriculum is commercially available, along with similar programs also being studied in Head Start.

“You can impact both social, emotional and the pre-academic skills at the same time, in the same classroom, with the same teacher, without overwhelming the teacher,” Griffin said.

Bierman next wants to train parents to reinforce these lessons. Meanwhile, her advice for parents:

_Ages 3 to 7 are a key window for learning self-control. Talk to youngsters daily about their feelings and how to work through problems. Who did they play with? What made them happy? What made them sad?

_Get a misbehaving child to take a deep breath and calmly explain his or her feelings. That doesn’t mean give in. But saying, “I see you’re sad but it’s still bedtime,” helps children learn they can feel upset but still meet obligations.

AP NewsBreak: Gulf War vet health research lacking

WASHINGTON - Even as possibly hundreds of thousands of veterans suffer from a collection of symptoms commonly called Gulf War illness, the government has done too little to find treatments for their health problems nearly two decades after the war ended, a panel commissioned by Congress said.

The advisory panel of medical experts and veterans wants at least $60 million spent annually for research, calling it a “national obligation,” according to its report, obtained by The Associated Press.

The report, which goes to the Veterans Affairs Secretary James Peake on Monday, said the Defense Department cut research money from $30 million in 2001 to less than $5 million in 2006. Both departments have identified some of their research as “Gulf War research” even when it did not entirely focus on the issue.

“Substantial federal Gulf War research funding has been used for studies that have little or no relevance to the health of Gulf War veterans,” the panel concluded.

Independent scientists have declared that the symptoms of veterans of the 1991 Gulf War do not constitute a single syndrome. They have pointed to pesticide, used to control insects, and pyridostigmine bromide pills, given to protect troops from nerve agents, as probable culprits for some of the varied symptoms.

Based on earlier studies, the panel estimates that between 175,000 and 210,000 veterans from the war suffer from a pattern of symptoms related to their service. It notes that about one-quarter to one-third of those who served are affected by complex symptoms at rates higher than those in the military who did not deploy. Symptoms include fatigue, memory loss, pain, headaches, and difficulty sleeping.

“Studies indicate that few veterans with Gulf War illness have recovered over time and only a small minority have substantially improved. … Few treatments have been studied and none have been shown to provide significant benefit for a substantial number of ill veterans,” the panel concluded.

“Regrettably, 17 years after the war, this research still has not provided tangible results in improving the health of ill Gulf War veterans,” according to a draft of the 450-page report.

The findings are welcome news to Bobby O’Daniel. The 39-year-old Marine veteran said he has suffered from a hyperactive immune system, joint and muscle pain in his extremities, psychological problems and other issues since he spent several months in the Persian Gulf loading cargo on ships and on land. He said he first noticed problems when he was deployed, but his health has steadily gotten worse since he came home at 21.

O’Daniel, a member of the veterans advocacy group Veterans of Modern Warfare, left the military shortly after his war duty. He said he has been discouraged over the years that more attention was not paid to help these veterans.

Health:Deaths uncounted in China’s tainted milk scandal

LITI VILLAGE, China - Li Xiaokai died of kidney failure on the old wooden bed in the family farmhouse, just before dawn on a drizzly Sept. 10.

Her grandmother wrapped the 9-month-old in a wool blanket. Her father handed the body to village men for burial by a muddy creek. The doctors and family never knew why she got sick. A day later, state media reported that the type of infant formula she drank had been adulterated with an industrial chemical.

Yet the deaths of Xiaokai and at least four other babies are not included in China’s official death toll from its worst food safety scare in years. The Health Ministry’s count stands at only three deaths.

The stories of these uncounted babies suggest that China’s tainted milk scandal has exacted a higher human toll than the government has so far acknowledged. Without an official verdict on the deaths, families worry they will be unable to bring lawsuits and refused compensation.

So far, nobody is suggesting large numbers of deaths are being concealed. But so many months passed before the scandal was exposed that it’s likely more babies fell sick or died than official figures reflect.

Beijing’s apparent reluctance to admit a higher toll is reinforcing perceptions that the authoritarian government cares more about tamping down criticism than helping families. Lawyers, doctors and reporters have said privately that authorities pressured them to not play up the human cost or efforts to get compensation from the government or Sanlu, the formula maker.

“It’s hard to say how the government will handle this matter,” said Zhang Xinkui, a Beijing-based lawyer amassing evidence of the contamination for a possible lawsuit. “There may be many children who perhaps died from drinking Sanlu powdered milk or perhaps from a different cause. But there’s no system in place to find out.”

In the weeks since Xiaokai’s death, her father and his older brother have talked to lawyers and beseeched health officials, with no result.

“My heart is in pain,” said her father, Li Xiaoquan, a short, taciturn farmer with hooded eyes. From a corner of his farmhouse courtyard in central China’s wheat and corn flatlands, he pulls a worn green box that once held apples and is now stuffed with empty pink wrappers of the Sanlu Infant Formula Milk Powder that Xiaokai nursed on. “We think someone, the company, should compensate us.”

In coal-mining country 450 miles to the northwest, Tian Xiaowei waits for his wife to leave the newly built house before removing five small photos of a wide-eyed baby boy from a brown plastic document folder. “She breaks down when she sees them,” Tian said. The photos are the only mementos left of year-old Tian Jin, who died in August.

“I want these people who poisoned the milk powder to receive the severest punishment under law. I want an explanation and I want consolation for my dead child,” said Tian, a broad-shouldered apple farmer and part-time truck driver. “I feel like we could die from regret. If we knew that it was contaminated, we would never have fed him that.”

Since September, when the scandal was first reported, Beijing has said that Shijiazhuang Sanlu Group Co., the dairy, knew as early as last year that its products were tainted with melamine and that company and local officials first tried to cover it up.

The government has promised free medical treatment to the 50,000 children sickened, and unspecified compensation to them and families of the dead. The Health Ministry, which is coordinating the government’s response, declined to answer questions about the compensation plan and whether it was investigating deaths and illnesses not yet counted by the government.

Melamine, a chemical used as a flame retardant and binding agent to make cooking utensils and industrial coatings, is rich in nitrogen. As such, it makes an attractive low-cost additive to milk and other foods; nitrogen registers as protein on many routine tests.

Though melamine is not believed harmful in tiny amounts, higher concentrations produce kidney stones, which can block the ducts that carry urine from the body, and in serious cases can cause kidney failure.

All eight babies who died were diagnosed with kidney failure, according to the families, medical records or state media accounts. All also supposedly drank Sanlu infant formula or powdered milk.

The fathers of Li Xiaokai and Tian Jin both wave inch-thick sheaves of medical reports and tests from their children’s stays in hospitals. Xiaokai, a twin older than her sister Xiaoyan by three minutes, was fed with Sanlu formula while the younger girl nursed on breast milk because their mother did not have enough for both, family members said.

An ultrasound examination of Xiaokai’s kidneys at the Zhengzhou Children’s Hospital on Aug. 21 found a stone in each kidney that was about the size of a small marble and 2 1/2 times larger than what doctors consider a critical threshold.

Tian Xiaowei, the apple farmer, sent bags of Sanlu infant formula to a government laboratory in September. The Xi’an Product Quality Supervision Institute’s report, dated Oct. 8, found melamine levels of 1,748 milligrams per kilogram, more than 800 times the government-set limit.

Then there’s Wang Siyu, the daughter of an accountant and proprietor of an Internet cafe in the central city of Shangqiu. Siyu was fed Sanlu products from birth and developed recurring kidney problems in May last year, at age 3, said her mother, Li Songmei.

Twice hospitalized, she was taken off Sanlu milk and started to recover, only to fall ill again when the family began to give her Sanlu products, Li said. Sick for a third time and swollen, she died of kidney failure at the Zhengzhou Children’s Hospital on May 2, said Li.

“Ever since she was born, she had been using Sanlu milk. Only when she felt sick and couldn’t eat did she stop taking Sanlu,” said Li.

Others among the five include an infant in far western Xinjiang province, whose story was posted on the provincial government Web site, and a 6-month-old boy in southeastern Jiangxi province, reported by the New Legal Daily. A reporter who worked on the article and would give only his surname, Liu, said the newspaper was careful not to blame Cai Cong’s death on Sanlu formula because “the local government has not yet reached a verdict.”

Medical experts say kidney stones in infants are rare. Doctors in several parts of China first noticed a rise in cases in the past two years. Pediatric urologist Feng Dongchuan tried to sound an alarm, posting an item on his blog in July about a spike in cases at his hospital in the central city of Xuzhou and in nearby Nanjing city. Feng pinpointed infant formula as the likely cause.

Feng at first refused requests for interviews, then responded in a terse e-mail: “The chance for infants or small children to come down with kidney stones is very small, and having stones that obstruct both kidneys is even more rare.”

Like the others, the Li family grew distressed when Xiaokai started to become fussy in July. With their two-acre farm in Liti Village, her parents never had much money and already had a child, a son. But they wanted a larger family, bucking the one-child family planning limits. Xiaokai was “the more active” of the twins, said her 70-year-old grandmother, Li Xuan.

By August, Xiaokai was running a high fever, unabated by ever higher doses of medicine. Alarmed after she stopped eating and urinating, the family took her to the nearby Runnan county hospital on Aug. 18. The doctors diagnosed kidney failure and rushed her overnight by ambulance to Zhengzhou Children’s Hospital, three hours away and the best in Henan province.

“They knew right away,” said the father, Li. Xiaokai was run through tests and put on intravenous solutions to try to shrink the kidney stones. Unable to stay with her or afford a hotel, Li and his mother slept on the pavement outside the hospital. After five days, the hospital said it could do no more.

“The doctors wouldn’t operate because they said ’she’s too small,’” said Li. They suggested taking Xiaokai to Beijing or Shanghai. Hospital officials declined comment and refused to make Xiaokai’s doctor available.

The hospital stay in Zhengzhou cost 7,331 yuan, or $1,070 - about a year’s cash income for the family - and they had already borrowed money to pay for Xiaokai’s care.

So Li brought Xiaokai home to die. They took her to a traditional medicine doctor in the village, who gave her an herbal medicine and confirmed the grim prognosis. “The old doctor told us ‘the child will die in 10 to 18 days,’” Li said.

Early on Sept. 10 while it was still dark, the grandmother called Li into the side room where she and Xiaokai slept. “Her stomach was puffy” - a sign of kidney failure - “and she wasn’t breathing,” he said.

In many parts of north China, the death of a child is considered a misfortune that can bring bad luck on a family and is best suppressed. Accordingly, Li Haiqin, a cousin, and three other men took Xiaokai to a creek on the far side of the village fields. They put a brick in the blanket with the body and placed it in a shallow hole under a path between rows of poplar trees. Then they walked back in silence beneath a gray dawn and a light rain. No close family members were there and none was told where the grave is.

Xiaokai’s family says Beijing had waived regular inspections of Sanlu because its quality controls were said to be excellent. “The government should shoulder its responsibility. This was a national brand, inspection-exempt products,” said Xiaokai’s uncle, Li Shenyi.

Since the death, Li Shenyi approached the Runnan county Health Bureau to classify Xiaokai’s death as caused by tainted formula. “They said the upper levels (of government) were working on it,” he said.

The county health bureau referred calls to its supervisors in Zhumadian city, who said ultimately it was up to Beijing.

“Right now, the Health Ministry has no clear explanation on how the victim’s families should be compensated,” said a Ms. Shang at the Zhumadian Health Bureau’s medical affairs office. “Nobody knows.”


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