"Liberty and justice for all"

From Texas Monthly:

"Failing Darla"

http://www.texasmonthly.com/2009-07-01/btl.php

When you live here long enough, you become inured to certain things that might otherwise drive you crazy, like the fact that we rank, among all states, near or at the bottom of too many lists: dead last in health insurance coverage, forty-ninth for children living in poverty, well below average in the incarceration of nonviolent teenagers, and so on. So when the Legislature gets infatuated with a nonpressing issue—this session it was voter ID—instead of trying to improve dire situations that have persisted for decades, the public response isn’t outrage but a collective shrug. It’s our way to embrace the bright side of the Texas myth (independence, individualism) while ignoring the dark side, which leaves the less fortunate to fend for themselves. Some of these evils have been with us for so long that we’ve come to believe they’re intractable, even though other states have proved they aren’t. And when outsiders say we’re backward in our nonapproach to social ills—what else would you expect from Texas?—the historic response is to circle the wagons in collective defensiveness.

Those were the kinds of thoughts running through my mind this spring when I happened to meet Darla Deese, who is fifty and “developmentally disabled” (the polite term for “mentally retarded”), at the precise moment, after decades of abuse and neglect, that the Legislature had budgeted $507 million for care of people like her. “It’s going to create a lot of opportunities for people . . . to stay in their homes or a community setting,” state representative John Zerwas, of Richmond, jubilantly told the Houston Chronicle. If only that were true. Of the 66,000 developmentally disabled Texans who have been waiting up to eight years for services in their communities—some trapped in institutions, some with families stressed to the max—a mere 7,000 will have their needs met. It is a measure of how bad things are (we rank forty-eighth in funding for the developmentally disabled) that some who fought for the increased appropriation and accompanying reforms are grateful for what they got.

In truth, most people do not care about the fate of the mentally retarded. Adults with developmental difficulties are children in grown-ups’ bodies, which means that they are expensive and time-consuming to care for. In Texas, they and their families have two choices: institutions, which, at best, serve as human warehouses, or community services, which are available to only a lucky few. “I believe waiting lists are immoral,” says state senator Judith Zaffirini, of Laredo, who has done more than any other legislator for the developmentally disabled. In general, the strategy of our state government has been to lurch from crisis to crisis—or lawsuit to lawsuit—while maintaining a dysfunctional system that is outdated, underfunded, and incomprehensibly bureaucratized.

The $507 million came about in response to a 2008 civil rights investigation of Texas’s thirteen state schools by the U.S. Department of Justice. The findings read like something out of a fifties horror movie: residents put in straitjackets, overly and improperly medicated with psychotropic drugs, and worse. “More than 800 employees across all 13 facilities have been suspended or fired for abusing facility residents since fiscal year 2004,” the report notes. “Over 200 of the facilities’ employees reportedly were fired in fiscal year 2007 alone for abuse, neglect or exploitation of residents . . .” Injurious falls went unnoticed, claims of rape unprosecuted. “The mortality rate for some of the facilities raises serious concerns regarding the quality of care that facility residents receive. In recent years, one of the facilities averaged two resident deaths per month.” It’s worth noting that the now infamous “fight club” scandal at the Corpus Christi State School, in which employees pitted residents against one another, occurred months after the feds released their report. In other words, at least one school investigated and found wanting was in no hurry to clean up its act.

This fact would come as no surprise to Darla and her sister and lifelong advocate, Esther Hobbs, who is sixty. The women now share a sun-drenched house in the Montrose section of Houston, where Esther runs a public relations business. New people sometimes make Darla nervous; she shook her head and was reluctant to make eye contact when Esther introduced us. Until a few years ago, she slept with one eye open and often threw her hands up in the air, as if warding off an attacker. “We don’t know what she’s been through,” Esther said of Darla’s 31 years in the state’s care.

Darla’s story is typical of many developmentally disabled Texans’. She was born in Beaumont, into a strict Southern Baptist family of modest means. Her father was a car salesman, her mother a homemaker. A beautiful girl with blue eyes and blond ringlets, she was the last of four children. Her mother had had a medical emergency when she was pregnant that resulted in a loss of oxygen to Darla’s brain. But her oldest sister was more than willing to take her on. “Darla was like my baby doll,” Esther told me. “From the time she was born she was my responsibility.” Even so, this was the late fifties and early sixties, when there was much shame and little hope associated with mental retardation. The family’s doctor urged that Darla be institutionalized, and her parents agreed. “I came home one day and she was gone,” Esther told me. “They didn’t talk about things then.” Darla had been sent to the Mexia State School. She was five.

Her decline there was as predictable as her interminable loneliness. She lost the ability to speak in anything but single words and almost always seemed afraid. When Esther came to visit with her parents, Darla leaped into her arms and wept wretchedly whenever it was time for her family to leave. Then, less than a year into Darla’s stay, her parents got a middle-of-the-night call from a state school worker. “I’ll probably lose my job over this,” she told them, “but your daughter doesn’t belong here.”

For the next year Darla lived at home and attended special-education classes at a Beaumont public school. Esther left home at eighteen and not long after discovered that her parents had moved her sister to the new state school, in Richmond, just south of Houston. Darla would spend the next thirty years there. Initially she lived in a dayroom with thirty or so girls, sleeping in a cubicle and sharing hard wooden chairs. “They had nothing to write on, nothing to read,” Esther said. Darla came home every other Sunday, on holidays, and on her birthday, but she was more like a wild animal, Esther remembers, than a human being. Often she had cuts and bruises; when Esther asked staff what had happened, they always said that Darla had fallen down. Who really knew? The turnover among her direct care staff was high; most worked for minimum wage and had little or no training. Around age twelve, with her parents’ assent, Darla had a hysterectomy; there was sexual activity at the school, they were told, and no one wanted her to get pregnant.

In 1991, when Darla was 32, she was moved to another part of the school. At that point, her female caretakers were replaced by men; even more worrisome to Esther was the fact that some prison inmates purported to be mentally retarded had been shipped to state schools in an effort to ease prison overcrowding. On visits Esther sometimes found her sister’s face smeared with makeup or bruised. Darla developed a fear of trees, which led Esther to suspect that she was being raped in the woods on school property. After Darla’s caseworker reported that she had been sexually abused, Esther complained repeatedly to the state school staff and to the Fort Bend County Sheriff’s Department, but to no avail. (This outcome is unsurprising in cases involving the developmentally disabled: Claims by them or on their behalf are routinely seen as lacking credibility, even though the Justice Department’s Office for Victims of Crime estimates that nearly 83 percent of developmentally disabled women will be sexually abused in their lifetime.) About a year later, Esther was called by a caseworker who reported that Darla had a human bite mark on her back. Esther went to the school looking for her, and she found her huddled in a corner, inconsolable and “beaten beyond recognition.” “She was the saddest person in the whole wide world,” Esther told me.

By the mid-nineties, Esther could no longer live with the situation; she persuaded her mother to allow her to become Darla’s guardian. By then, her own health was suffering—her skin itched as if it were on fire—and when her doctor diagnosed stress and asked about the possible causes, Esther told him about Darla. She remembers his response as if it were yesterday: “Everyone in the medical profession knows what they do to those kids. You need to go get your sister right now.” She did. “It was two years before she would let me hug her,” Esther told me.

If this were a movie, Darla’s life would have taken a dramatic turn for the better. That’s not what happened. She joined the proverbial waiting list to take advantage of government funds and services, but it was eight years before she got any. In the meantime, Esther put together a patchwork of private day care programs, some of which kept Darla no safer than she had been at the state school (a large bruise on Darla’s inner thigh was diagnosed as, yes, evidence of repeated sexual assault). For several years, out of desperation, Esther ran her own school, but she had to close when grants dried up.

It doesn’t have to be this way. Zaffirini and other advocates believe that $1 billion is needed to solve some of Texas’s worst problems, like inadequate training and low staff pay at state schools. More important, though, is the way money is allocated: Too much of it goes only to large, outdated, expensive institutions instead of smaller, cheaper-to-operate community-based programs, which many developmentally disabled people and their families prefer. (The Mexia State School, for instance, is the largest employer in town, a problem for any politician who wants to improve care but remain in office.) Overall, says Zaffirini, it will take a change in the popular will to create a system—from home care to institutions, with many alternatives along the way—that can help the developmentally disabled live decently and safely, earning money and contributing to society.

Until then, the waste of human potential, and human life, continues.