WASHINGTON — Three weeks ago, former Sen. Rick Santorum (R-Pa.) canceled campaign events in Florida on the eve of the state’s primary to be with his ailing daughter in a Philadelphia hospital. His three-year-old, Bella, has a genetic condition that can be fatal and had contracted pneumonia. On the phone from his daughter’s hospital room, the presidential candidate told reporters, “It’s been a very hectic 36 hours.”
Bella recovered, but Santorum rejoined the campaign with his daughter’s health still on his mind. Stumping in Minnesota, he insisted that children like his daughter who are on the “margins of life” would not get adequate medical attention under President Barack Obama’s health care reform law. He went so far as to invoke former Alaska Gov. Sarah Palin’s infamous charge that the federal law would create bureaucratic “death panels.”
“In top-down, government run systems, patients become commodities, and their value is based on their usefulness to society,” Santorum elaborated to The Huffington Post. “Often times, those with special needs are not viewed as ‘useful’ by society’s standards — and far too many like our little girl have been forced to receive inadequate care and in many instances no care at all.”
“We need a health care system that provides consumers the best choices for the best care available. These choices should not be left in the hands of bureaucrats to judge an individual’s value. Instead we should place that choice in the hands of the consumer — the children and the parents — who can make the best choices for their individual circumstance.”
“Put simply, a patient should be the decision-maker in their care — not a government or bureaucrat.”
Despite his advocacy for patients’ rights and his stake in providing care for severely vulnerable children, Santorum has avoided discussing another personal experience with the health care industry. From 2007 through the first half of 2011, Santorum served on the board of directors of Universal Health Services, Inc. (UHS), one of the country’s largest hospital chains.
According to the company’s Securities and Exchange Commission filings, as of Feb. 28, 2011, UHS owned 25 acute care hospitals and 206 behavioral health centers located in 37 states, Washington, D.C., Puerto Rico and the U.S. Virgin Islands. Many of those facilities include or are classified as residential treatment centers (RTCs) — secure facilities charged with the difficult task of treating children with severe mental-health or behavioral issues, many of whom are living very much on the margins of society.
The RTCs make up a significant part of UHS’ business portfolio. The UHS board on which Santorum served is partially responsible for general management of the company’s operations. Santorum declined to comment on his work at UHS or the company’s RTCs.
RTCs are often last chances for kids who haven’t adjusted to foster care or who come from the juvenile justice system and are at risk of possible mental health problems. Although the process varies from state to state, children are generally sent to residential treatment centers by child-welfare agencies or juvenile-justice authorities. Parents sometimes turn to these facilities on their own as well if there are no other options that their insurance will cover. The centers tend not to produce a lot of happy moments — those that a presidential campaign could highlight in a stump speech or a cheery video.
The Department of Justice is close to settling with UHS over allegations that it committed medicaid fraud in one of its RTCs. The DOJ settled a case with the company in 2009 for $ 27.5 million over allegations that it bribed doctors to get them to refer patients to hospitals in Texas. Various state authorities have penalized UHS facilities with serious sanctions, suspending their licenses and barring them from receiving Medicaid reimbursements. In several incidents, staff and patients have been implicated in criminal activity ranging from rape to homicide.
The Huffington Post has documented these incidents in a series of stories on Santorum and the hospital chain.
Placing children in an RTC, away from home and in the care of strangers, can be hard on parents even when things go well. In a majority of cases, the RTC is the last option offered by their insurance and only after less severe options have been tried. It doesn’t mean they give up their rights as parents, however, just as with other hospitals. They get to make decisions about things like medications, and can generally remove their children at any time.
But in interviews with HuffPost, two families of former UHS patients treated at the company’s RTCs voiced a common complaint — a feeling that their parental rights stopped at the facilities’ front doors. They recall RTC staff limiting communication with their children, flouting parental consent, and brushing off their attempts to monitor their loved ones’ care. They all say that their troubles started soon after their children were admitted.
ON NEEDLES AND PINS
In the fall of 2008, Candace Touchstone, 38, brought her 11-year-old daughter (who asked that her real name not be used to protect her privacy), to UHS’ Timberlawn facility in Dallas, Texas.
Touchstone says her ex-husband had been physically abusive to her and their child when their daughter was five. Her daughter had struggled with the memories, becoming more and more withdrawn. She began running away from home that September. Her attempts became more daring — one time she was found at a major intersection in central Dallas a mile and a half away. She had a suitcase full of canned goods and some clothing. On the fourth and final attempt, she jumped out of her mother’s car and hid in a bathroom stall in her therapist’s office building. It took Touchstone nearly two hours to find her.
After seeking help from private therapists, Touchstone says the doctors recommended Timberlawn, thinking it could stabilize her daughter. She says doctors told her they had never been there and admitted they did not know what it would be like. Timberlawn was just 10 miles from their home, however, whereas the only other facility that Touchstone’s insurance would pay for was 60 miles away.
During the intake process, Touchstone says she explained to Timberlawn’s doctors and staff that her daughter had an extreme phobia of needles, and she forbade doctors and nurses from using them on her daughter. John Touchstone, who married and later divorced Candace after she left her ex-husband, says he made a similar request.
“One thing we told them was don’t give her needles,” he explains. “She’s afraid of needles.”
The Touchstones say the admissions nurse promised they would not inject their daughter, but then promptly did so — restraining her and injecting her three times with tranquilizers.
The next morning, their daughter tried to kill herself.
In a largely barren room, she took off her pants and tied them around her neck so tightly that the staff had to cut them off. The Touchstones say their daughter had never spoken of or attempted suicide before.
The Touchstones’ daughter, now 14, recalls her mother repeatedly telling her that she wouldn’t get shots, and the devastation she felt when the doctors injected her.
“I remember thinking everyone was lying to me,” she says. “I couldn’t stay in a place like that. I couldn’t. I just. I didn’t know. I remember looking — they put me in a room with a window. I remember thinking … I would never be able to leave. And that was the only way to leave.”
Candace and John Touchstone say a doctor called and apologized and promised they would not inject her daughter again but that during the following shift a nurse did so anyway.
After that, the Touchstones say, their daughter tried to kill herself by wrapping her shirt around her neck. Timberlawn did not return a request for comment.
John Touchstone says he felt helpless once his step-daughter entered the RTC. “I’m a man,” he says. “I fix everything, right? And this is something I can’t fix. You’re stonewalled. You got a child who won’t talk to you. And you have a hospital that won’t listen. There’s not any support.”
He says it felt like he was putting his step-daughter into Gitmo. “You might as well waterboard her,” he says. “That’s what it felt like. That was kind of the overtone of everything. It seemed like that was the level of care we got at that hospital.”
That dynamic proved frustrating for Candace Touchstone, who says she constantly called the RTC to inquire about her daughter’s care. “They felt like I was fighting against them,” she says. “I was fighting for her. They didn’t see that.”
Rooted in the early 20th-century juvenile-justice reform movement, which favored work farms and bucolic reformatories over hard time, residential treatment centers tend to play up their idyllic, often rural settings when marketing themselves, according to experts and written accounts about the industry.
Timberlawn, founded in 1917, advertises itself as just “a half day’s buggy ride from the bustling city of Dallas.”
In the last decade or so, in fact, health care experts have dismissed these facilities as about as old fashioned as the horse and buggy. The U.S. Surgeon General condemned the RTC model in a widely-circulated report in the late ’90s. “In the past, admission to an RTC has been justified on the basis of community protection, child protection, and benefits of residential treatment,” the nation’s top health official wrote. “However, none of these justifications have stood up to research scrutiny.”
The RTC’s isolation can be an incubator of pathology as well as a hindrance to family-supported therapies, analysts say. “Families are often not regularly involved in decisions made about their children when moved to a RTC, and this isolates them from continuing engagement with their child and limits success,” wrote Bruce Kamradt, director and founder of Wraparound Milwaukee, a consortium of social service agencies and providers who work on preventing RTC placements, in an email to HuffPost.
A year before the Touchstones’ daughter entered Timberlawn, the Washington, D.C.-based University Legal Services published a study on RTCs and highlighted the barriers between parents and children in these settings. The report noted that the isolation “severely impedes youths’ clinical treatment and quality of life. The isolation that comes from being in an institution cannot be overstated.”
Candace Touchstone, who is a nurse at a state-run mental hospital, thought there was no way the staff at Timberlawn could inject her daughter, because she had not given consent. But Jennifer Lav, ULS’ managing attorney and the author of the study, says that facilities often don’t take families and guardians into consideration.
“We’ve had quite a few [cases] where parents say ‘I want to know why my child is taking medication, if this is the correct one, I didn’t authorize this medication,’” says Lav.
In December 2010, Karen Dunning, 50, flew her 14-year-old schizophrenic daughter, Alysha, from Arvada, Colo., a suburb of Denver, to the San Marcos Treatment Center in San Marcos, Texas. At the time, she was desperate to get her daughter help.
“Our local mental health center found it,” she says. “When they found there was a bed, they gave us 24 hours to get her there. I didn’t get a chance to look at it. She had been in and out of the children’s hospital psych ward four or five times in the previous six months. She had been in acute care for two months.”
Dunning says staff at San Marcos promised her that Alysha would be under constant supervision for the first 48 hours. On Alysha’s first day, however, Dunning says, another patient slammed her head against a concrete wall, punched her in the face, and gave her a bloody nose. That night, a staff member left Dunning a message downplaying the incident, according to a voicemail provided to HuffPost.
“Another little girl I guess got mad at her about something,” the staffer stated, “She hit her in the nose. … She’s OK.”
The next day, Dunning says, Alysha passed out and had no pulse and no blood pressure. San Marcos did not call 911, however, and Dunning says the facility didn’t notify her for hours. When they did, they told her they had laid Alysha down, and she started breathing again on her own. They only had a psychiatrist check her out. “I was beyond panic mode,” Dunning says. “That was day two.”
Dunning says her daughter complained that her face was black and blue. Personnel told her it was just the bloody nose. “I wanted to Skype to see her,” Dunning says. San Marcos rejected her request, citing privacy laws. “I said I can waive that because she’s my child. Nope, they wouldn’t do it.”
Touchstone estimates that she called UHS’ corporate headquarters between 10 and 15 times complaining that her daughter had been mistreated. She says she never got a call back.
Isa Diaz, vice president of UHS public affairs, declined to comment on individual cases, citing UHS policy and patient confidentiality laws. “All UHS facilities place quality of care and patient satisfaction as our most important priority,” she wrote in an email to HuffPost. “UHS provides extensive training to its staff on all patient care matters including but not limited to medication administration, restraint usage and protecting the safety and well being of our patients.”
Dunning says that San Marcos only allowed phone calls in 15-minute slots and near a staff desk, so patients had no privacy. Often the background noise was a girl screaming at Alysha to get off the phone, Dunning says. Every time Dunning reached her daughter by phone, Alysha would tell her that the facility scared her.
“She’s crying every time I talk to her,” Dunning explains.
Making matters worse, Alysha was assigned a blind therapist, despite the fact that Dunning told staff that her daughter communicates visually better than she does verbally.
Alysha says the scariest part was simply getting beat up and that the staff was rarely around to protect her. “They weren’t doing anything,” she says.
During a conference call concerning her daughter’s 10-day review, according to a tape recording Dunning provided to HuffPost, the San Marcos psychiatrist charged with Alysha’s care made it clear they did not appreciate Dunning’s level of oversight. “You try to micromanage everything,” he complained to her.
“She’s my child, I’m going to,” Dunning replied. “She doesn’t belong to you.”
The doctor urged Dunning to trust them. He said that Dunning’s calls put the staff on edge and interfered with therapy. “The trust needs to be earned,” Dunning said. “This is not micromanagement. This is the concern of a parent.”
The doctor then blamed Alysha’s mental-health struggles on her mother. “I think that some of her problems are caused by your over involvement,” he said.
By then, Dunning also discovered that San Marcos wasn’t properly monitoring Alysha’s diabetes and filed a complaint with Texas social services. The state investigated the diabetes incident and confirmed that the staff at San Marcos had failed to provide appropriate care, according to a Texas Department of Family and Protective Services report. San Marcos did not return a request for comment.
Alysha continued to be assaulted as well — at least six times during her month there, Dunning calculated, before she finally decided to remove her from San Marcos.
Dunning says the UHS facility was her only option because there were no places in Colorado that would fit her daughter’s needs. The local mental health provider couldn’t offer the level of intensive in-home services Alysha required, Dunning explains.
Several states, including Wisconsin, Virginia and Tennessee, realizing the limits and costs of institutional care, have worked to develop alternatives to sending kids far from home.
The city of Hampton, Va., stopped sending children to RTCs in April 2007, finding more success by keeping kids in family settings. Instead of secure facilities, therapists make house calls. Mental health, social services and the courts all collaborate and meet on individual cases. The city also sees extended family members as resources for taking care of kin.
Others have pursued similar reforms. In Wisconsin, Kamradt began transforming social services in the mid ’90s with his Wraparound Milwaukee initiative. His model emphasizes keeping at-risk kids out of RTCs by giving families leadership roles and support from coordinated government agencies, a pool of private providers, and emergency services for moments of crisis.
The wraparound model works, Kamradt says, because it emphasizes families over RTCs, small case loads and intensive services. “It’s around strengths and needs of kids,” he explains. “Better we plan this together. We’ll look at family needs too. If the youth problem is he’s in a gang and the mother really needs to get out of this neighborhood, we may find alternative housing. If she needs a job, we’ll try to find a job for her. We’re going to focus not only on the kid’s need but the family’s need.”
If the Touchstones’ daughter had run away in Milwaukee instead of Dallas, a team could have been put in place to help her immediately and link Touchstone with community-based assistance. She would not have to have had an expensive hospital stay. Recent figures show RTCs can cost hundreds of dollars per day, per child. In comparison, family-based models cost a fraction of that amount.
“It’s a great paradox in child welfare: the worse the option, the greater the cost,” Richard Wexler, executive director of the National Coalition for Child Protection Reform, explains. “Once the child is admitted and the door is closed behind him, the RTC is effectively in charge.”