Systemic Neglect

Inside Texas' troubled institutions for the mentally retarded.

Jolyn Lilleberg

Around Christmas last year, a janitor allegedly entered the room of a resident in an all-women dorm at the Austin State School. He didn’t announce “man on the home,” as required by this sprawling institution for the mentally retarded. He didn’t leave the door open, as per policy. He pried the resident, Nancy, from her wheelchair and forced himself on her.

At first, Nancy told no one. After a few days, her quiet demeanor convinced her therapist something was wrong. He sent Nancy to the infirmary for an examination. Lab tests found semen inside her. She identified the janitor as the perpetrator.

Yet investigators from the state agency that oversees institutions for the mentally retarded refused to cite the Austin State School for neglect. They looked into the incident, filed away the complaint as “unsubstantiated,” and left it at that. The janitor wasn’t sanctioned. He still works at the school. He still cleans Nancy’s dorm.

The Texas state school system—13 facilities, nearly 5,000 residents and 11,000 employees—is the largest remaining set of mental institutions in the nation. The name itself is a misnomer. The facilities aren’t schools, but repositories for the mentally disabled of any age who require 24-hour supervision. The residents are Texas’ most vulnerable: some afflicted with autism and Down syndrome, some who can’t feed or dress themselves, and some who can’t even rise from a gurney or speak. And according to government records obtained by the Observer, the very people charged with caring for these patients are victimizing them.

In the past three years, investigators have confirmed 1,266 instances of abuse at the 13 facilities, according to data from the Department of Aging and Disability Services. Some of those cases were publicly revealed in a July 2007 Dallas Morning News story and in a December 2006 U.S. Department of Justice report on the Lubbock State School. Federal investigators discovered that staffers there failed to provide adequate medical care or protect residents.

Yet after an exhaustive Observer investigation, it is clear that the abuse in the state schools is worse than previously reported. The Observer combed through thousands of pages of agency records and interviewed dozens of state school employees, parents of residents, and advocates to uncover nearly two dozen cases of serious abuse. There was the staffer at a facility in the East Texas town of Mexia who repeatedly bashed a resident’s head against a metal door. A nurse in San Angelo who drew blood from a patient, but failed to remove the band that constricted his arm; the band remained there unnoticed for more than five weeks, and was removed then because his arm turned blue. The woman in Lufkin who whipped a patient 10 times with the back of a hairbrush while yelling, “I’m tired of this shit.” Two workers in Corpus Christi who walked into a dorm room to find a resident had hung herself, but instead of rushing to help, simply left. There were broken bones, lacerations, bruises, and dozens of instances in which residents were allowed to sexually assault each other.

Some advocates for the mentally disabled have cited the abuse in a campaign to prod the Legislature to shutter these facilities once and for all. They want residents moved to group homes in a community setting. State schools are a decrepit system of dehumanizing institutions, where staff neglect, beat, rape, and sometimes kill residents, they say.

But the reality within Texas’ state schools—where stories are rarely as simple as they first appear—is more complex.

Nancy—like many residents—had made false allegations against staff before, including fictions against the very same janitor, according to agency records. When investigators interviewed her, Nancy initially provided two names of people who had attacked her. Mentally disabled patients are, not surprisingly, often unreliable witnesses. Much of what we know about Nancy emerges from government documents. She is moderately mentally retarded and prone to “self injurious behaviors and tantrums,” as facility records describe her. We know her name only because her caregivers bravely provided it. They risked their jobs to pierce the secrecy and anonymity with which facility administrators hide abuse of disabled patients in the name of privacy.

For his part, the janitor claimed that he hadn’t worked on Nancy’s dorm in more than a month and was rarely even on campus during the five-day span during which the attack allegedly took place. No physical evidence linked him to the crime. Austin police couldn’t administer a rape kit because they were informed of the attack more than 96 hours after it took place. Nurses found no scarring or signs of trauma in Nancy’s genital area. Staffers who frequently work with her told investigators that raping Nancy would be difficult because she screams and fights whenever strangers simply try to touch her. Some staffers suspected that she actually had sex with another resident.

Administrators were left with a conundrum: How can you let an accused rapist work in a facility containing hundreds of vulnerable residents? But how can you punish a man based solely on an accusation from a mentally disabled women with a history of fabrications? Charging the janitor with rape may have constituted an injustice of its own.

Something happened to Nancy that night. The details of how it happened and who is to blame—like so much of what occurs in the state school system—remain difficult to decipher.

There is injustice in Texas’ state schools, but the cause is much more insidious than staff abuse. The state schools lack the resources to adequately care for residents. The Texas Legislature has chronically shorted the schools’ funds. The result is an overburdened staff earning fast-food wages. Even after lawmakers authorized a minor increase in staff in 2007, many of the new positions haven’t been filled. The low pay and daunting task of caring for the mentally retarded make quality applicants hard to find. On January 1, 2008, the Austin State School actually employed fewer people than the year before. This is the underlying injustice in Texas’ treatment of the mentally disabled. Yes, there are serious abuses of the mentally retarded in Texas’ public institutions, but these isolated cases of cruelty are just the beginning of the problem.

Sarah Knowles and Espiridion Delao

The state of Texas designed state schools for patients—or “consumers,” as state officials prefer to call them—whose primary diagnosis was mental retardation, usually people with IQs of 75 or below. (The average IQ score is about 100.) That’s different from someone with a mental illness: bipolar disorder, attention deficit hyperactivity disorder, severe depression, schizophrenia, or other psychological afflictions unrelated to IQ. State schools house the elderly, institutionalized for decades, and children who stay one year. Their functionality ranges from gurney-bound invalids who can’t move or talk to teenagers who barely qualify as mentally retarded and leave the campus to attend school.

But in recent years, the makeup of state school residents has changed considerably.

The fastest growing segment of the population is patients with mental retardation and mental illness—what’s known as “dual diagnosis”—according to numerous state school workers and administrators. Many of these residents are teenagers and 20-somethings with mild retardation, meaning they’re high-functioning, with relatively high IQs, but their primary diagnosis is severe mental illness: bipolar disorder, schizophrenia, attention deficit hyperactivity. State schools are picking up the slack in Texas’ feeble mental health system. Texas has no public, long-term care facilities for adults with mental illness. Severely mentally ill adults in Texas often end up on the street, in prison, or in a state school.

This growing population has increased violence in the state schools.

The San Angelo State School was once home to mostly elderly, docile residents. The facility opened in 1912 as “Anti-tuberculosis Colony #1” north of town on an isolated West Texas plain, where, in winter, even the golf courses turn brown. It was once known as “Happy Valley,” recalled one direct care staffer who’s worked at the San Angelo State School for more than 15 years. Like many workers interviewed for this story, he didn’t want his name used for fear of retaliation. (State school workers are forbidden from talking with the press.) This employee remembers that more dual-diagnosis residents began arriving in the late 1990s—younger, more violent patients. The facility became an increasingly dangerous place. “There was a time I would’ve encouraged someone looking for a job to try San Angelo State School. I certainly would not today. The mixing of the population of infirm elderly and Down syndrome with younger, higher level and often violent juveniles seems cruel and ethically wrong to me,” said the staffer.

The facility’s population is a diverse and volatile mix: the elderly and infirm; young girls committed because judges found them incompetent to stand trial for violent crimes; teenage boys with severe mental illnesses; and even a handful of sex offenders. They all are a threat to each other and the staff. While the groups live in different dorms, keeping the facility’s diverse populations separated is a constant challenge, administrators say. They sometimes must lock up residents.

Among the patients who live in a locked dorm, replete with bars on the windows, are juvenile girls sent there by criminal courts. San Angelo is one of three state schools that accept “court referrals,” defendants found incompetent to stand trial. (The juvenile girls go to San Angelo.) The girls are locked away to protect them from at least four registered sex offenders who live at the facility, according to state records. But the girls are also a danger to other residents and staff. One San Angelo employee told state inspectors touring the facility in spring 2007 that San Angelo State School housed “the most dangerous female population in the state,” according to the inspectors’ subsequent report. The staffer described his workplace as “a minimum security prison.”

“When they go off, it’s like fighting a wildcat,” another San Angelo employee, who asked not to be identified, told the Observer. He tries not to harm residents and to maintain proper technique when restraining them. But it’s hard when a grown man or a 17-year-old girl who’s committed violent crimes is kicking, punching, and biting. Patients sometimes fall or become injured during restraints, in which case the workers likely face abuse charges.

The three state schools that house court referrals—San Angelo, Corpus Christi, and Mexia—are the most violent in the state. Between 2005 and September 2007, the three facilities accounted for 57 percent of the abuse allegations in the 13-facility system.

During the past three years, patients and staff called in more than 16,000 allegations of neglect in state schools. But just because abuse was alleged doesn’t mean it actually happened. In fact, the majority of the complaints are found to be fabricated. Residents can use phones in each facility to call an abuse hotline any time. Some residents use the hotline against the staff. They regularly call in false complaints against staff they either don’t like or become angry with.

State abuse policy is stringent. It requires an investigation of all allegations. Accused workers must go on leave, potentially for weeks, during an investigation, which can further deplete a staff that says it’s overstretched.

When investigators probed those 16,000 allegations, they confirmed abuse in 1,266 instances (8 percent). Many of the dozen state school employees interviewed for this story said the 1,266 cases of verified abuse made the facilities appear more violent than they actually are.

The Department of Aging and Disability Services, the state agency that runs the state schools, has strict definitions of abuse, which can include a staffer making a mean comment or simply failing to prevent two residents from having consensual sex. For instance, in 2005, there were 30 confirmed incidents of sexual abuse at San Angelo State School. But dig deeper, and it turns out that 27 of those occurred on a single afternoon, when three workers told inappropriate sexual jokes in front of nine residents. Three workers and nine residents, under the state rules, equaled 27 separate incidents of abuse.

This doesn’t minimize the real abuse that has occurred. In one of the most gruesome incidents uncovered by the Observer, an employee at Mexia State School in East Texas earlier this year repeatedly bashed a resident’s head into a metal fire door. The impacts left large dents in the metal exterior. When other staffers tried to intervene, he pushed them away and told them to “close their eyes,” according to state records. (The employee was later fired.)

And as in Nancy’s case, there are incidents of likely abuse that, for whatever reason, state officials have tossed aside as “unsubstantiated” and forgotten.

Austin State School Dorms

Karen Yeaman’s son broke her arm. It was late March, and Lathom, who’s 17 and autistic, was visiting Karen and her husband for a weekend away from his group home. Lathom possesses the strength and hormonal surges you would expect of a teenager coupled with the mind of a 12-year-old. That weekend, he had an episode. He became upset—it was hard to know why exactly. Karen reacted the wrong way; she did exactly what she counsels others against. It’s better to stay away until the episode passes. Weeks later, her right arm still in a cast, she shakes her head at her own foolishness. She should have known better than to approach him, try to calm him down with words or a touch.

Lathom was diagnosed with autism in 1998 at age 7. Yeaman and her husband were living in Dripping Springs, where they own a business that sells ranch fencing. The Dripping Springs public schools couldn’t—and in Yeaman’s view didn’t try to —accommodate Lathom’s needs. He spent long stretches of the day shunted to a corner.

Karen moved into her mother’s house in the suburb of Clear Lake and enrolled Lathom in a specialized private school outside Houston. The school was 50 miles away. Karen and her mother dropped Lathom off and picked him up—200 miles of driving each day. The tuition was $25,000 annually; gas for the commute added another $10,000.

For two years, it was worth it. His mind calmed; episodes become infrequent, and his IQ rose nine points in a year. He even played Little League. Karen keeps a picture in her wallet of Lathom in his blue baseball uniform. “I usually don’t carry pictures of my kids. I’m not one of those people,” she says, opening her wallet.

“Isn’t that a great picture?” In the photo, Lathom has assumed the standard baseball card pose: kneeling on one knee. He is smiling. “It was almost like a typical kid.”

But the Yeamans couldn’t afford to make it last. The tuition and travel depleted their savings. After two years, they returned to Dripping Springs. Lathom’s condition deteriorated rapidly. He was going through puberty at the time. The Yeamans couldn’t handle him at home.

There was little choice left: She would have to surrender Lathom to a state institu
ion. If your child is too wild to liv
at home—and unless you’re extremely wealthy—the state schools are your only option. “There is nothing in between respite camp or someone coming over for a couple of hours on the weekend—there’s nothing between that and the state school,” she says. “It’s all or nothing. I would not have put him in the state school if we had any other alternative that we could afford.”

She enrolled him in the Austin State School in spring 2006. It was hard not to think she had failed, that despite the long drives and all the money spent, she had let him down. He would live among 12 teenagers in the so-called “high behaviors” dorm, a place for younger boys prone to sudden violence.

Yeaman will tell you that her son saw and felt violence during his year in the Austin State School. She will tell you she didn’t trust some of the staff, that a few should have been fired. But she will also tell you the facility treated Lathom well, that the state school helped her son immensely.

One day Lathom rummaged through another boy’s dresser and took some money. The kid discovered it and attacked Lathom, and no staff were there to prevent it. He wasn’t seriously hurt. Another day, Lathom refused to surrender a toy airplane. A worker forced it from his hand, and the toy cleaved Lathom’s finger. He would be OK, and Karen knew it was an accident. “The guy was a good staff member,” she says. Following through on the investigate-everything mantra, the facility put the staffer on leave pending an investigation. He was cleared and later returned to work.

At one point, Karen bought Lathom a bike. Staffers at the facility scrounged through their budget and found money to purchase eight more bikes for boys in the dorm. They rode with staff through the campus. After a year, Lathom’s condition had improved enough for administrators to recommend him for community living. He transferred to a group home, where he now lives, in a South Austin neighborhood duplex staffed 24 hours a day—with just one other resident.

While the community setting has been good for Lathom in most ways (Yeaman notes that he had more freedom to roam outdoors at the state school), group homes aren’t necessarily for everyone. But whenever possible, the law now requires state schools to transition residents into the community.

In 1999, the U.S. Supreme Court, in a ruling that has become known as the Olmstead decision, fundamentally altered how states care for the mentally disabled. The court ruled that states, under the Americans with Disabilities Act, are required to transition mentally disabled patients—if they so desire and can demonstrate a modest ability to live independently—from state-run institutions to community settings.

The ruling hammered into law a trend away from institutionalization that many states had already adopted beginning in the early 1970s. In contrast, Texas clung to the institutional model prior to the Supreme Court ruling. In the nine years since Olmstead mandated that Texas change its ways, the state has moved nearly 1,000 patients from state institutions to community group homes.

Advocates for the mentally disabled say more, if not all, state school patients should be moved out of dehumanizing institutions and into community group homes, where residents can come and go as they please, interact with neighbors, even hold jobs. Groups such as Advocacy Inc. and the ARC of Texas—which have a long history of advocating for improved conditions for the mentally disabled—want the state school system closed entirely or drastically contracted.

Nearly everyone agrees that high-functioning patients capable of some measure of independent living are better off in a group home. But what about the most impaired—those who can’t rise from a gurney? Parent groups say that group homes are simply unable to care for the severely disabled.

Amy Mizcles, with the ARC of Texas, says that if a program is properly designed, “anyone can live in the community.” In fact, the Supreme Court makes it their right. She hopes the recent controversy surrounding state schools will prod the Legislature to begin closing them.

Many parents of state school residents vehemently oppose closure. They believe the facilities keep their loved ones alive. And they are deeply distrustful of privately run group homes. After all, the primary mission of government-run institutions is to care for residents. For-profit companies can own group homes.

“Your group home is only as good as the compassion of the people that are working there,” Yeaman says. At Austin State School, she saw elderly residents roaming the campus. “They were fine. If they want to stay there, let them stay there. The ones who need to get out, get them out.” If severely impaired patients are moved to a group home, Yeaman wonders, “How much difference is there going to be in their life? Just because they get [patients] out and expose them to typical people—that may educate typical people, but what does it do for that person with the disability? I’m not for closing state schools. I don’t think they’re for everybody. But I think they serve a purpose.”

For Yeaman, the state schools, like an entrenched bureaucracy, can perform well if you push the system. Lathom received good treatment, in part, because of Karen’s surprise visits. “I could walk in at any time, and I did,” she says. “They never know when you’re going to drop in.” Yet she never met the parents or relatives of any of the other boys in Lathom’s dorm. Some parents choose to pretend their troubled child doesn’t exist. For these residents, the state school is their family now.

The Austin State School sprawls across 95 acres in the middle of a tony West Austin neighborhood. The facility is mostly one-story buildings splayed around green fields adorned with trees. The 436 residents live in large wards—two and three beds to a room—but there are also more intimate cottages for a dozen residents. You enter down a short driveway that leads to the 19th-century brick administration building.

Guiding a tour on a November morning, Austin State School Superintendent Ross Robinson and Cecilia Fedorov, the agency spokesperson, calmly brushed aside queries. Asked if he had adequate staff, Robinson said, “We’re able to meet people’s needs.” Fedorov pointed out that state schools were engaging in an aggressive hiring push. Asked about reports of abuse, Fedorov said the agency has tough abuse-reporting requirements and all allegations are investigated thoroughly. The message: The reports of crisis in state schools are exaggerated.

In fact—as internal e-mails subsequently obtained by the Observer revealed—Robinson and his staff were scrambling at the time to rectify numerous problems at the facility. A few weeks earlier, in mid-October 2007, state inspectors had subjected the facility to an annual review. Austin State School didn’t fare well.

The inspectors’ report, which runs more than 200 pages, tags the facility with 40 separate deficiencies of varying degree, the most severe of which was a resident deemed in “immediate jeopardy” on October 25. She had tried to commit suicide eight times in just a few months, despite one-on-one supervision, which means a staffer is supposed to remain within arm’s length at all times. There clearly were lapses, because the resident had managed to swallow nail polish remover, broken glass, a paper clip, and a staple, and to drink an entire bottle of perfume, according to the inspection report. Given her severe mental illness, her presence at Austin State School shows just how much facilities designed to treat mental retardation are dealing with the mentally ill. Administrators quickly provided more supervision for their suicidal resident, and the immediate jeopardy designation was removed the next day.

Even so, inspectors concluded the facility was troubled enough to warrant termination of its funding—if problems weren’t rectified—in 90 days. Many of the facility’s flaws, according to the report, arise from two issues: too few employees and paltry salaries.

A shortage among one particular type of employee was especially troubling to inspectors. They found the facility had too few Qualified Mental Retardation Professionals. These are pseudo case managers who are supposed to ensure that patients are making progress in their treatment. They told inspectors that they were working 50 to 60 cases at a time in multiple dorms—a caseload double recommended levels. One staffer told inspectors, according to the report, that the case managers were “overstretched” and consequently patients “fall through the cracks.”

Inspectors also found that staff shortages led to carelessness and borderline neglect. In several dorms, only two or three staffers cared for 15 patients. Employees rushed tasks. Inspectors watched a staffer feed a patient dinner in six minutes—with nothing to drink—shoveling spoonfuls into his mouth before he could swallow. Another resident was seen scratching and picking at his head, and then placing the scabs in his mouth, according to the report. There were no staff around to stop him.

The low staffing levels at Austin State School became so dire that in February of this year, an exasperated employee actually called the abuse hotline to complain about a crisis of too-few workers at the facility, according to state records. The employee, who wasn’t identified in government documents, said the staff couldn’t look after all residents and that patients were suffering as a result. The worker said it was “only a matter of time” until a resident was injured or killed because of staff shortages. (Agency investigators brushed aside the complaint as “unsubstantiated.”)

To patch the holes in staffing, state schools have instituted a policy that no employee can leave work until someone shows up to fill the next shift. This leads to workers commonly burning through overtime, working 15- and 16-hour shifts several times a week. They are also denied vacations. To use paid leave, staffers must find someone to fill their shift—a trade of work time. This vacation requirement is almost unheard of in state government and grossly unfair, though it’s legal, says Jim Branson with the Texas State Employees Union.

The starting pay for direct care staff—the men and women who watch after the mentally retarded—is about $8 an hour. That paltry salary forces state schools to hire people right out of high school, or who had been delivering pizzas or working at gas stations. Some of these less-qualified workers resort to abusing residents, physically or verbally, and lose their jobs. Others, Branson says, can’t take it for very long and simply quit.

The turnover rates at state schools are astronomical. The turnover for all employees at all 13 facilities was 36 percent in 2007, according to agency data. Among direct care staff, it was more than 50 percent. At the Austin State School in 2007, seven out of 10 direct care employees quit or were fired within a year.

Asked about staffing levels, Laura Albrecht, spokesperson for the Department of Aging and Disability Services, pointed out that the Legislature hiked funding for state schools by $110 million last session. The money was supposed to fund 1,690 new jobs. It was the Legislature’s first substantial increase in state school funding in a decade. However, the Legislature granted no money for broad salary increases.

The current pay is simply too poor to attract and retain quality employees. “It is a highly competitive market, especially for nurses,” Albrecht told the Observer in written response to questions. (Addie Horn, who heads the aging department, declined an interview request. Ross Robinson, the head of Austin State School, also declined a request for a follow-up interview.) As of mid-April—nearly a year after the Legislature approved funding for new employees at state schools—only half the new positions had been filled.

Of the positions that were filled, most were nurses, and a few were case managers. The agency has allocated hardly any money to hire more direct care staff, the employees who work most closely with residents.

State inspectors returned to the Austin State School for a follow-up inspection the first week in December. This time, the facility rated well. Inspectors didn’t catalog a single failing, and the 90-day termination threat was lifted. Robinson and his staff had worked long hours, including weekends, according to internal e-mails, to rectify the many deficiencies. Yet the chronic staffing shortages remained.

Just days after the inspectors departed, at about 8:15 p.m. on December 8, a staffer was preparing to bathe one of the elderly residents. The employee was working in an unfamiliar place. Another night of short staffing had forced supervisors to shift the worker to a dorm that needed extra staff. These so-called “pulls” are a chronic problem in state schools. In some facilities, there are pulls nearly every night. Employees find themselves in dorms they’ve never worked, with patients they’ve never cared for, and stuck with tasks they’ve never performed.

On this night, the pulled staffer placed the elderly woman on a bathing trolley—a rolling contraption that allows residents to be washed lying down. One of the rails on the trolley wasn’t locked. The resident tumbled off the trolley and smashed to the floor, slamming her head. X-rays at a nearby hospital revealed a deep hematoma, massive bleeding in her brain. She would be dead within days. (It was one of 28 deaths at Austin State School in the past three years.)

An investigation ensued, and the worker was fired. Administrators claimed, according to state documents, that all employees are told how to operate bathing trolleys. Investigators from the state concluded that the employee was entirely to blame—though she had rarely used a bathing trolley or handled the patient. Inadequate staffing had thrown a worker into an unfamiliar task, alone, and now an elderly woman was dead because of it.

Yet the Austin State School wasn’t cited for neglect, and neither was the state of Texas.

Dave Mann is a former editor of the Observer.

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