RIGHTS FOR THE RETARDED

ON A HILL on Fort Worth’s far southeast side is a big, grim building dotted with small, barred windows and encircled by two tall rows of barbed-wire fence. It’s a prison. A mile down the hill is another complex, a spread-out group of single-level, beige brick buildings surrounded by paved paths, playground equipment and slightly parched grass. It’s the Fort Worth State School (FWSS), run by the Texas Department of Mental Health and Mental Retardation (MHMR).

Lately, the prison and the school have similar reputations. Or maybe the school’s is worse. It’s the place where those children were beaten. It’s the place where, sometime during the night of February 26, two severely retarded boys with Down’s syndrome were brutally lashed with a strap.

Chris Cockerham, the more severely injured of the two, was left in his dorm room with a black eye and bruises and cuts on his back, buttocks, throat and forehead. His father, Harold Cockerham, snapped pictures of the injuries the next day and later called the FBI. The Fort Worth Police looked into the matter, too, but finally asked a Tarrant County grand jury to take the case after they couldn’t identify the responsible party. Cockerham said he would wait to see whether there was criminal prosecution before he filed suit.

Employees, parents and an otherwise oblivious public were appalled by the incident. Brenda Miller, whose son Jimmy lives in the school’s Running W dorm where the incident took place, was terrified. “I recognized the boy when they showed pictures of him on the TV news. I was so surprised. I’d seen the staff in that dorm break their backs to care for those kids and give them occasional good times. Suddenly I had to wonder, ’Is Jimmy next? Did he see this happen?’ “

Bad news continued to break. In June, a Fort Worth Star-Telegram banner story reported that school records showed that at least 10 mentally retarded residents had been subjected to abuse or neglect since September 1983. The piece described an incident involving a physically handicapped woman who was blistered after she was left unattended in a hot shower.

Reporter Dan Malone didn’t stop there. He wrote of other employees who were dismissed “after reports that clients had been cursed, struck, hit in the face with keys and doused with soapy water.” Another case chronicled committee abuse records that told of three workers who were fired after they allegedly took turns beating a client.

Administrators offered the seemingly paltry excuse of a shortage of personnel. In theory, staff/patient ratios are maintained at the FWSS, but the numbers aren’t always adjusted to account for shortages when workers are absent from work or are taking breaks.

Then, in May, after the school’s Client Abuse and Neglect Committee failed to identify the person or persons responsible for the February 26 beatings, the grand jury indicted two 24-year-old direct-care attendants on charges of injury to a child. These were the same two women Brenda Miller recalls bringing home-cooked dinners to the school on Christmas Day. Charles Best Jr., a Dallas organizer with the Texas State Employees Union, told the Star-Telegram he did not believe the women were guilty; instead, he said, they “are scapegoats to cover up the state school’s mismanagement.” The culprits, according to Best, “are understaff-ing and mismanagement.”



STILL NO GOOD NEWS



The indictments haven’t ended the school’s ordeals. A widely publicized gonorrhea epidemic that infected eight of 20 boys in one dorm raised questions about the possibility of homosexual activity at the school; administrators say tests proved that no such behavior was involved and that the disease was probably contracted when the boys left campus together.

Staff members are beginning to speculate about the possibility of sabotage against the school. FWSS is apparently a current target in a national movement (spearheaded by the Association of Retarded Citizens) to close institutions within 12 years. Proof of the crusade’s potential power are the statements of those parents who admit they are growing doubtful that any amount of improvement can stop the barrage of criticism against the school. Those opposed to state-run institutions hope that FWSS’s reputation can be so thoroughly sullied that the state will finally opt to close it.

FWSS Superintendent Mel Hughes is aware of the growing anti-institutional bias, but can’t do much about it except try to make the school better. He doesn’t deny that many of the abuse reports are valid and that conditions at the school need to be improved. Hughes is busy stretching an already tight budget, beefing up the staff and increasing the number of rounds made by administrators and supervisors during all shifts.

One sure way to improve FWSS is to use every means available to assure that potential employees are suited for their jobs. Hughes has been asked by Texas’ MHMR department to review hiring and screening procedures. Currently, applicants for entry-level jobs at all Texas state schools must go through the Texas Employment Commission. The TEC administers a Basic Occupational Literacy Test and then refers applicants to the school-a practice FWSS administrators don’t like. Some suspect the arrangement was instituted to keep the TEC in business.

Parents and families of clients who read the horror stories about the FWSS can scarcely believe that it’s the same school they visit on weekends, the same place they picnic on May Day and watch their children compete in Special Olympic games. What most parents see of the FWSS’s residential and educational buildings is not a grim or slimy torture chamber. There are no long, dank halls or detention tanks for those clients who misbehave.

The tile floors and cream-colored cinder-block walls are clean. If there is a smell, it’s likely to be disinfectant. One end of the gym is filled with huge, brightly colored foam blocks used for various types of therapy and play. Down a hall is a closed-circuit television studio. There’s a canteen and even a few video games. About a half mile away, still on the school’s 273-acre campus, is a wilderness camp for picnicking and overnight outings. It isn’t the sort of place where you’d expect aides to come at children with straps.

Many of the problems the school has experienced, Hughes says, have simply been blown out of proportion. He is anxious for the public to understand the meaning of “abuse” as the state uses the term. “It can be as simple a mistake as not using the client’s name [in conversation] or using foul language. Negligence might be the failure to provide a treatment as ordered.” The number of abuses is misleading, too, he says, since the official count doesn’t always differentiate between serious and non-serious abuses.

Rix Rutland, president of the Parents Association of the Retarded of Texas, a 3,000-member group that supports the state school system, told the Star-Telegram, “No abuse is good, but.. .about 95 percent of the complaints. .. really do not amount to abuse. They are things like this: My daughter’s socks were lost in the laundry. The buttons broke off her shirt. Her shirt is missing. I heard one of her attendants say ’damn you.’ Those are all classified as abuse.”

Cassandra Clark, a service assistant who has worked at the school for three and a half years, says it’s very difficult to prove client abuse. Often, it comes down to a staff member’s word against a client’s. “If a male client said I raped him, they would put me on suspension and my name would be in the paper before anything was ever proven. Some workers have gotten to the point that they are afraid to restrain clients because the action may be construed as abuse.” Donna Opperman, director of volunteer services and public information, says that because of the publicity, staff morale has suffered tremendously. “With the indictment of the two direct-care attendants, all the employees at the school have been indicted. The reputation of every employee has been called into question.”

Opperman points out that injuries to staff members are much more common than mistreatment of clients. Clark spent 10 days in the hospital with a back injury when a young man ran up behind her and butted her against a wall. There were 287 employees injured in fiscal 1983, with complaints ranging from broken eyeglasses to broken bones.

Judy Craig understands how the stress of caring for the mentally retarded could lead to a loss of temper. She cared for her son, Joe Bob, at home for 21 years until she and her husband made the decision that he would be happier and able to receive more services in an institution. Mrs. Craig says she thinks the abuses took place because of the strain caused by insufficient staffing. “It’s difficult for me to control my emotions around Joe Bob. I can imagine what it would be like to take care of several who are biting and acting up at once. I don’t condone what happened, but I don’t think it would have happened had there been more staff present.”



NO ORIGINAL EXCUSES

“We lack funding, we lack staff’ is the perpetual cry of every state and federal department, but at the FWSS, the stakes are especially high. Lack of direct-care personnel and the lack of funding to improve the school’s condition is a Catch-22 situation, Hughes says. The FWSS is still recuperating from poor management during the administration that preceded him. Since then, Hughes says, he has reduced the number of administrative personnel at the school by 17 in order to hire more direct-care staff. “But how can you do more than keep up with inflationary increases when you never get a budget increase of more than 5 or 6 percent? How can the public expect different results when we get the same amount of money?” Due to inflation, decreased per diem rates and loss of Texas Education Agency money, the school has lost $197,000 in the last four years.

Hughes planned to submit a budget for the years 1986 through 1987, asking for a 73 percent increase over their present $30 million for 1984 to 1985, but the MHMR in Austin nixed the plan, saying a request for such a large increase was “irresponsible.” Hughes says he believes the MHMR will allow him to ask for a 60 percent increase, “but I doubt we’ll get but 10 percent. That’ll cover the inflationary increases and little else.”

Wilbur Savidge doesn’t believe more money will improve the school. He is one of the school’s most vocal and vehement critics and says that now the school has plenty of money that it just isn’t putting it to good use. Savidge is involved in a $14 million suit against the school and claims that “the place functions like a death camp.” His severely retarded son, Jonathan, still lives there. He contracted a staph infection with boils while living at the school and eventually developed a cyst on his brain. The infection was caused by the filth in which he lived, his father says. “I saw children in his dorm crawling around, some with feces falling out of their diapers, some playing with urine-soaked socks.” After the cyst was removed, Jonathan was paralyzed on his right side.

Savidge is often asked why he doesn’t move his son to another state school or into a private institution if the FWSS is so bad. He says, “Why should I run from the problem? What about the others who can’t be moved? As long as Jonathan is out there, the place has a thorn in its side-I’m out there too.”

Savidge’s lawsuit charges chronic abuse and neglect and accuses the school staff of responsibility for the paralysis. He is funding it through the Brums Foundation, which was established in memory of Mark “Brums” Jones, who drowned in a state school bathtub in 1981. The money came from the $237,100 court settlement that the boy’s father, Reese Jones, decided to make available for use by other families who decide to sue a state school.

Jones and Savidge are open about their long-term goal to shut down the FWSS and institutions like it across the country. Jones says, “I was one of those idiots who thought state schools weren’t so bad.” Now he is eager to tell otherwise. Savidge admits to having “spies” on the campus, who inform him of occurrences that might be useful in litigation or helpful if the press could make them public.

“The only way that place is going to be changed completely is if it’s closed,” Savidge says. “What we’ve seen so far is just the tip of the iceberg. We believe that Texas state schools are weak in management and that they are the biggest bureaucracy in the state. The supervision is left to the superintendents, and they build their own kingdoms.”

In those words is the crux of the conflict going on at the FWSS. Jones and Savidge belong to the ARC. The organization’s members believe that the mentally retarded could be better served by alternative places of care-more specifically, small group homes within residential communities. The group is also a proponent of the Chaffee Bill (No. 2053), which aims to eventually phase out institutions for all but the most severely retarded and transfer federal funding to smaller group facilities.

ARC’s first victory was in July in Philadelphia. On the 12th day of that month, an agreement was signed that ended a 10-year legal battle that had reached the U.S. Supreme Court three times. Pennhurst Center for the Mentally Retarded, a 68-year-old red brick institution located 30 miles out of Philadelphia, will be closed within two years.

In the case of Pennhurst, school administrators joined members of ARC in “celebrating the agreement to close.” Superintendent Gordon Kopchick said he was in favor of the plan. “People worry that grouphome arrangements aren’t as stable or as easy to monitor. They don’t understand that what makes things stable is funding. The state of Pennsylvania is committed to supporting these arrangements and decreasing the institutional budget.”

Pennhurst set the precedent for the FBI investigation of abuse in state institutions. Nine employees at that facility were indicted on charges of violating clients’ civil rights by beating, kicking and slapping them. The attorney for the clients was David Ferleger, a Philadelphia civil rights lawyer who represented the family of Brums Jones and who is now employed by Harold Cockerham.

Kopchick says that the families of clients now living in Pennhurst are fighting the decision more than anyone else and that he himself initially had misgivings. “I had my doubts that the community-living situation would work. I didn’t think people would accept the severely retarded along with the mildly retarded-the ’poster children.’ We figured it wouldn’t happen. But the per diem cost to support a client in the community is $50 less than it was on campus at Pennhurst, chiefly because all the support personnel are not needed.

Pennhurst’s legal battles were much the same as the ones now being waged at the Fort Worth State School. Reports of abuse became so bad that Kopchick employed an undercover police officer to watch for problems. He sympathizes with Hughes: “Litigation makes you look like the bad guy. The more you uncover, the more you look like you’re running a hellhole, even though you’re the one trying hardest to straighten the place out.”



WHY SHOULD OPTIONS BE LIMITED?



The case for institutions is built on preserving the highest quality care for the most severely retarded individuals. Children and adults at the FWSS (62 percent of whom, incidentally, are from Dallas County) are now grouped by adaptive skill levels and by IQ. Every client’s goal is to progress, but for many, this may only mean eventually being able to sit or eat without help. For less retarded clients, reasonable goals may include prevocational work on campus in the greenhouse, in food services or in the school’s paper-sorting, stapling and collating factory. Eventually, some clients may move on to employment in the community at a full-time job or a sheltered workshop while residing in a small group home. A small group home is a residence with houseparents and fewer than eight live-in clients located within a community; the FWSS now contracts with six small group homes. Zoning hang-ups, begrudging acceptance by established neighborhoods and lack of funding keeps the number of small group homes below needed levels.

FWSS parents and administrators aren’t in opposition to the Chaffee Bill or alternative places of care, but they do worry that the push to close institutions isn’t the best solution if it’s the only solution. In two of the five residential buildings at the FWSS reside severely retarded children and adults, most of whom are bedridden. The institutional method of providing care seems to make better sense in their case, since medical care and often expensive therapy equipment is more readily available. Living within a neighborhood, the parents and administrators say, would make little difference to the most severely retarded. Much of the furor over providing the “least restrictive environment” for all retarded citizens is valid, but in the case of a child who can never comprehend the danger of a car or a train, such freedom may not be in the child’s best interests.

Winnefred Mitchell is one parent who will fight tooth and nail to keep the FWSS open. She does not believe that her daughter, Deanie, would be better off in a small group home. Deanie, who suffers a convulsive disorder that has caused severe brain damage, lived at home until she was 9. Then Win-nefred and her husband realized how much their other children’s lives were being affected by Deanie. “She took all my time. It was the hardest thing I’ve ever done, putting my child in a state school. It was a parting like death, knowing she’d never live at home again. But now when we take her home, all she can talk about is her friends at school. She can’t wait to get back.”

Hughes says he wishes all the clients at the state school could move to small group homes, but because that is not now possible, the answer is to ensure that state schools are the best they can be. “The best place to stay is at home-I can’t argue with that-but neither can I argue with reality. State schools aren’t open because we want to be in business. Next month, 20 clients are expected to move into alternative community residences, and in the next three months, other residential opportunities will open. But we still have about 60 people on an active waiting list.”

State institutions do not profit from needlessly institutionalizing clients. The question is: Why can’t both care alternatives exist? Nancy Ward, current president of FWSS’s parents’ association, would like to see the co-existence of ample small group homes and well-staffed state schools. Her retarded daughter, Diane, is 22 and lives at the FWSS. Like Winnefred Mitchell, Ward says that having her daughter at home prevented the rest of the family from having a normal home life. “It was unfair to the other girls to have her home, but the state school is certainly not where you want your child to be. You never get over putting your child here.”

Ward supports the school but admits its shortcomings. She has gone to Austin every year to tell the Legislature about the school’s desperate need for more direct-care workers. She says she thinks that the school will continue to have problems as long as it is short-staffed. Her daughter fell and broke her hip recently because, Ward believes, of the shortage of staff supervising her.

In a speech presented to the Texas MHMR, Ward mentioned the two problems that she believes cause most of the mismanagement and abuse at the school. “I feel, as many other parents, that the critical shortage of direct-care employees at our school contributes to the occurrence of abuse and accidents. Quality care cannot be provided without funds to employ adequate direct-care staff. This is essential to the well-being of all children and adults in state schools.”

The negative side of the Fort Worth State School is easily outlined: too little money, too few direct-care attendants, inadequate screening procedures of prospective employees and too much sensationalized media coverage.

But there is a case for institutions. Writing in Newsweek’s essay column “My Turn,” Fern Kupfer, herself the mother of a severely handicapped child, suggested that popular attitudes toward institutions aren’t right. “What we need are options and alternatives for a heterogeneous population. We need group homes and halfway houses and government subsidies to families who choose to care for dependent members at home. We need accessible housing for independent handicapped people; we need to pay enough to foster-care families to show that a good home is worth paying for. We need institutions. And it shouldn’t have to be a dirty word.”

The good news about the FWSS is its new $1 million hydrotherapy center, paid for entirely by donations from the community. It is the first Texas state school to offer scholarships to employees who want to return to college. Other victories at this state institution are less tangible conquests -rarely the stuff of front pages. Client Elizabeth Washington is moving to a small group home in Brownwood. A 12-year-old boy is finally toilet-trained. Todd Pierce, whose microcephaly causes his head to be abnormally small, has a Michael Jackson glove and can moonwalk like nobody’s business. Clients Jimmy Seabolt and Carol Sue Hamilton are in love.

There are plenty of employees who obviously care about their clients. Cassandra Clark can’t hide the emotion in her voice when one of her students presents her with a piece of paper and says, “Look, I wrote my name. I worked on it all night.” Clark says she gave up a career in law to work for the state’s measly wages. (The starting salary for a direct-care attendant is $10,404-one of the lowest state-paid positions.) And Chaplain Dan Geeding has some good things to say about the school. He remembers a graveside funeral for a client that a whole busload of employees attended. The parent of the client arrived for the service after having gone 10 years without visiting his son. “Thank you for loving my child when I couldn’t,” he told them.



A BETTER FUTURE FROM PAST MISTAKES?

But Chris Cockerham’s tragedy shouldn’t be forgotten. None of the startling abuse and neglect that has occurred at the FWSS or any other of Texas’ state institutions should be rationalized or swept away. Winnefred Mitchell says, “There have been plenty of mistakes made here, and if we don’t do something soon we won’t have a school.” She’s right. But the Fort Worth State School isn’t a hell hole. It doesn’t function “like a death camp.” It is a long way from perfect.

Hughes remains optimistic that the school can be improved and that institutional care and care within the community can coexist and be of high quality. “Fort Worth State School is not a problem. It has some problems. People can work from within to straighten things out, or they can work as adversaries. I don’t want people to be comfortable until they are sure that the rights and safety of every client are ensured. But in order for this to happen, people have to work together and get involved. They can accept group homes into their neighborhoods; they can help increase the amount of money allotted to MHMR by letting the legislators know that they want the funding increased. That won’t happen through litigation.

“I say that now we are doing a good job- the best job we can do with the resources we have. There isn’t a client out there who couldn’t be better served in the community if the community had the willingness and resources to serve him.”

The willingness and resources thatHughes sees as essential are not now available. But until they are, the Fort Worth StateSchool is still in business, taking whole responsibility for the lives and well-being of482 retarded children and adults who liveon its campus. In a perfect world, therewouldn’t be institutions. There also wouldn’tbe deformed and retarded children. For now,though, the world isn’t perfect, and the FortWorth State School must do the best jobit can.